“As Sam got worse we had to make decisions on feeding tubes, taking her out of school, and getting her equipment to be able to get around. During all of this Sam was still giggling and happy about what life was handing her.”
When I first started blogging, I had no idea that things would go in the direction that they have. I started by sharing the story about my stepping outside the box and what it meant to me. About how my life had been affected by a series of events. Things that were life changing to me. It started with an interest in our military’s special operations community. I started reading all these books about the military conflicts that America had found itself involved in. In particular, books about warriors that served in groups like the Navy SEALs and Army Special Forces. One book really caught my attention. It is called FEARLESS and it is about a Navy SEAL named Adam Brown. Adam, who was from Hot Springs, Arkansas gave his life in the name of freedom in March of the year 2010. His life story is incredible to say the least.
It is because of FEARLESS that my involvement with the Batten community and this blog got started. I went from an interest in and a respect for military warriors to a love for the young warriors who battle Batten Disease. If you know the story, you know that it is through an unlikely connection to another Hot Springs hero named Ali Vise, or Angel Ali, as she is known, that I got involved. She is the one who made me aware and who changed my way of thinking. It’s all here in this blog. I have visited Hot Springs twice and I started writing in large part to share the details of that experience. As I started to write I discovered my love for writing.
This blog has become so much more than just a random collection of thoughts and experiences. It has become a blog about people’s lives. The stories are about “life and loss.” All of the stories are about the “undying love” that Batten parents demonstrate through their actions. These stories are also about the strength and resilience that is revealed in Batten warriors. They fight so hard and most often they keep a smile on their sweet faces through the most difficult of circumstances. Some have battled and received their reward. Others continue in the fight!
I have talked about a most adorable little man named Kane and his beautiful momma who is named Linda. They are from South Carolina. How about a pretty awesome mom named Jessica and her princess that will be beautiful for all eternity? Nora Skye, I know Just Where You Are. Then there is My Royal Family. Oh, you mean they are your royal family too? Ollie and Amelia have my attention. They have an army and they are taking the high ground in the battle against Battens. I have talked about The Caring Type. The story is about Granny Pam and her prince of a grandson who is named Casen. He is from the great state of Texas but don’t look for him there. He is out spreading awareness to all that would care. Him and his best friend Seth now play all day at the heavenly playground that never closes. There is a dear lady in this blog that is from Greece named Christina. Her son is a rare rock-star and he is oh so handsome. Together, they have demonstrated what a Face To Face kind of love is and their story is beautiful. There is also this really special lady from Plymouth in the United Kingdom. Her name is Elsie. She tried to tell me that she is just an ordinary Nana but I wasn’t having any of that. She demonstrated No Ordinary Love for her handsome grandson Marshall. There is A Rare Friendship that involves two more brave warriors and their dear mommies. Little John, you will always be the Reason. As of late there has been beautiful Caitlind from Scotland. Make sure you read about her and her wonderful family. I was so happy that my friend Kadriye from Turkey could work together with me in telling the story about her two beautiful warrior princesses. One is in heaven and one is still here on earth.
And last, I want to mention Tyrell. He is the Prince of South Africa. His and his family’s story is a rare love story. It’s so sweet. As I write this, Tyrell is in the middle of the most difficult part of the battle with Batten Disease. I just want him and his family to know that they are loved. They are loved by me and my family and certainly by those in the Batten community. Whatever happens Tyrell, you will always be the Prince of South Africa and you will always be loved!
If you haven’t noticed, these stories are taking place all over the world. Batten Disease has no boundaries and it shows no prejudice. Some stories take place far away from where I reside and some take place closer by. This next story takes place in the state of New Mexico here in the United States. It was on Batten Awareness Weekend that I saw this most adorable little face, Actually, there were lots of adorable faces being shared that weekend as parents wanted to make people aware of this monster named Batten Disease. This particular little face belonged to Samantha Jewels Apodaca. She is indeed adorable. You know it’s true. I sent her mom a friend’s request and she accepted. She seemed happy to see what I was doing in my blog and I asked if we could work together on a story about little Samantha. She said yes, and of course I was so happy that she did. So here we go!
Vanessa Apodaca gave birth to Samantha on February 27th, 2006 at 5:00pm in the city of Albuquerque. Samantha would make her appearance into this world with Vanessa being a single mom, however, Vanessa, would not give birth to little Sam while being alone. Her dear mother, Julia would be right by her side. In fact Julia would be the first person to hold baby Sam. The connection was instantaneous and real. Vanessa was overjoyed as she looked at her newborn baby girl. To her, baby Sam was beautiful beyond description. She was so perfect in appearance. She had all her fingers and toes and she was without blemish. She was flawless. Samantha, however, was tiny. Vanessa delivered her five weeks early and she weighed only 5 pounds, 6 ounces. She was so tiny that even doll clothes did not fit. That, however, did not keep her from becoming a little doll. As she would grow, she would definitely become that. Look and see for yourself!
Baby Sam’s mom was a college student. She dreamed of a life for Sam that was complete. There is nothing that Vanessa wouldn’t do for or give to her daughter in order for her to achieve everything that the two of them would dream of. Just like any mother who is young and single, Vanessa would need help. When she did, her mother Julia was there for her in a big way just like when precious Samantha was born.
As little Samantha continued to grow she would become the center of everyone’s attention. She was just so cute and did the cutest things. She was so happy and made everyone that spent time with her happy as well. She was just so darling but that was not all. She loved to laugh and most often she would giggle. In fact she giggled so much that she was nicknamed the Giggle Box. Her laughter was infectious and she brightened the dreariest of days. She had the most loving little personality that one could imagine. As she continued to grow it was apparent that little Sam was a bundle of energy. It was a job keeping her busy at times. Samantha would continue to develop physically, however she did have delays in other areas. Little Samantha would often use only one word sentences. She was also kind of clumsy. She would fall often. As things moved forward Sam wouldn’t talk at the level that would be expected. At the time, her family didn’t think that much about it. Children are often slow to develop in certain areas.
Julia was the family’s main sources of income while Vanessa attended college. Together, her and Vanessa were a team in raising Samantha. Without her, things may have been much different. As Vanessa would put it, “I honestly don’t think I could have done it without the support of my mom.” From the very first time that grandma Julia held little Sam in her arms a special bond had been created. There was no mistaking the fact that there was a deep love between Vanessa and Samantha, however this bond between Samantha and her grandmother is worth noting. When Julia was in the house, there was no one else that Samantha wanted to be with other than her grandma. As I have mentioned, she was the main breadwinner and she worked very hard. She did it while working graveyard shift. Get this! At the very young age of only two years old Samantha would sneak out of bed at around four in the morning and wait for her grandma to get home from her shift. They would have breakfast together and go right to bed. They were the very best of friends.
Samantha was indeed a busy little girl. She enjoyed all the normal kinds of activities that you would expect. She loved to paint and go shopping. Cooking, watching Disney movies, and feeding the ducks were also some of her favorite things to do. They tried their very best to give their little Giggle Box everything that her little heart desired. Who could possibly say “No” to that little face. The family was able to afford a membership to the YMCA and they used it to go swimming. They lived at the pool and it became part of their nightly routine. Sam learned how to swim even before she learned how to walk. I can only imagine that her little self became pretty good at it. Perhaps we were talking about a future Olympic swimmer at this point. When Sam was three years old they took her on a family vacation to both Disneyland and Las Vegas. Sam disliked Disneyland so much that she cried almost the entire time they were there, however she loved Las Vegas. She loved it so much so that Vanessa and Julia had to hide the mail from Las Vegas hotels. This, because of the fact that if she saw the pictures, she would cry because she wanted to go back. Viva Las Vegas!!
During this time and while life continued, things began to change in Samantha’s health. On August 14th in 2009 Samantha had a play date at a local McDonald’s. She started choking on her food as Vanessa was driving. It would be months later that they would all realize that Samantha was actually having her first seizure. The next occurrence happened in the following month of September. The family was at home with Sam and they noticed something different about her. As she was walking, she was doing so as if she had been spinning around. Then she fell to the ground and started seizing as she was scooped up into her grandmother’s arms. I can only imagine the trauma at the scene. Something terrible was going on with Sam’s health. Something wasn’t right with the little person that was the center of their attention. Vanessa would tell me that as this was happening, she was in complete panic. Mom and Grandma next did what any parent or guardian would do. They loaded Sam up into the car and took her to the emergency room. They would eventually be sent home because there was not a Neurologist on staff. In Vanessa’s words, “We were sent home with no treatment and no answers.” This would be the beginning of the frustration that they would face in their quest for answers.
Life doesn’t seem like it is always fair. Does it? In fact, it brings with it some pretty cruel twist and turns. The human condition brings heartache and despair at times. Little children should be able to play and enjoy themselves in innocent fun as they grow and learn. Things don’t always go that way though. Do they?
Vanessa told me that Samantha had the best pediatrician. She would be able to get her an appointment at the University of New Mexico’s Children’s Hospital in the same week, however, they would have to wait a month to get in. I can only imagine the level of concern that Vanessa and Julia had for little Sam as they had to wait. Surely, the doctors would have some answers or at least a possible course of action once the appointment at the hospital was over. I am certain that the month of waiting seemed much longer to this family but the day would eventually arrive. Once there, things did not get better. The doctors could not determine the cause of the seizures. According to Vanessa, they were actually accused of making the details of Sam’s condition up when they first went into the appointment. How absolutely outrageous is that! Vanessa had this to say concerning the frustration she faced, as well as what she did in finding a strategy, “I knew that I had to get someone to believe us so I went to her primary doctor. I asked her “what can I do to get these neurologists to believe me?” This doctor stood by our side from the beginning to the end (Dr. Pawitta Kasemsap). She suggested that I record everything as it happens. This was a huge help when it came to showing doctors what was going on.”
The seizures would continue and in December of the same year Sam had a seizure that lasted over 15 minutes. Vanessa said that her reaction to the seizure was a mixture of anger and fright. In her own words she was “Mad because I could not help her, and scared, because I did not know what to do.” Paramedics would witness the seizure and actually told the doctors that Sam’s mother and grandmother were not lying about Sam’s condition. Good grief. It is distressing to think that was even necessary. Can you imagine having the stress of having to deal with a child that is suffering in this way and at the same time having to deal with medical staff that seemingly is working against you. I know that my own wife faced the frustration of dealing with some doctors when our special son Benjamin was small, however it was never to this degree.
Believe it or not, Samantha would see nine different Neurologists at UNMH and would never receive a diagnosis. Nine different doctors! I can imagine that with each appointment there would be a mixture of hope and frustration. There would be hope that answers could be found, and frustration with the lack of results. At first, the family was told that Sam had epilepsy and the doctors would just prescribe medication. The seizures continued to plague little Sam. The medications she was being given were making her seizures worse instead of better. It was recommended that they try the Ketogenic diet that is sometimes used with people that suffer from seizures. They tried it but had to stop because the diet started to ruin Samantha’s pancreas. Sam seizures would one day be better controlled but at one point she would have as many as 300 or more per day. Oh my, that is not epilepsy! Vanessa put it like this, “We were lost. It was hard seeing my child have 300 plus seizures a day. I was not getting any sleep. Mind you, I was going to school for my bachelor’s degree during all this. I felt like I had failed as a parent because I was not able to get answers.”
In the time that I have been following these Batten children and their families, I myself have seen an increase in awareness. That is the goal and that is why many of us are involved. I think that much of the awareness comes from the families themselves sharing over social media. Has it made a difference in the medical community? Is there more information available? Are doctors more knowledgeable? I hope so. I think that there have been some gradual improvements, however a knowledge of Batten Disease has still not been shared nationwide. So much more needs to be done. More funding. More research. More of everything. Batten Disease is a “rare disease” but you wouldn’t know it by looking at the number of children involved, spread over time.
During all this, Sam was still a happy little girl. She was still Julia’s and Vanessa’s Giggle Box. They were able to get Sam into a preschool program. She loved riding on the bus so much but Vanessa, being protective of her, would follow in her car. Sam would get angry on the days that mom or grandma would not let her ride the bus. To console her, they would take Sam for chips and salsa before taking her to school. That was her favorite thing to eat. Samantha loved going to her preschool and she especially loved her teachers, Mrs. Cami and Mrs. Jackie. They were both such a blessing to Sam. Samantha was able to compete in the Special Olympics while attending her preschool and I am sure that she greatly enjoyed that!
Not everything that happened while the family was at UNMH was bad. Yes, the frustration of not being able to solve Sam’s mystery was real, however a real angel of a lady was there to help them. In Vanessa’s own words, “We were blessed when Mary Ann Sloan came into our lives. She was assigned to Sam’s medical case. She is a nurse at UNM Children’s Hospital but she makes sure that the children there are getting the best care possible.” Along with the diet, several different medication changes were made. Nothing was working. Can you imagine going to school and dealing with all this at the same time? How about Julia and her work schedule? How difficult that must have been for her. The two of them had to have been driven by their love for Samantha. Mary was there for them. She suggested that they change hospitals and she recommended that they start traveling to Children’s Hospital in Colorado. The family did just that. They felt blessed once they got involved with this hospital and they traveled there every two months. The physician the family had in Colorado was
Dr. Pramote Laoprasert. According to Vanessa, he was the best doctor that they ever could of had. He was able to prescribe a series of medications that helped them get little Sam’s seizures minimized. He went above and beyond. Vanessa added this, “Even though he was in Colorado he gave us his home number to call when there were emergencies with Sam. He even consulted with UNMH Emergency doctors when we had to rush her into the ER.”
It makes my heart ache to see children and their families go through this type of thing. Little warriors! This family would travel back and forth from New Mexico to Denver for two years. A real demonstration of sacrifice and undying love. The family would finally receive the diagnoses and the news was devastating to them. It was delivered by a doctor in New Mexico and it wasn’t given in the most caring fashion. Vanessa was simply told that Sam either had Rett’s Syndrome or Batten Disease and that she would eventually die. Further genetic testing was performed and it was determined that she had (CLN2) Late Infantile Batten Disease. It took almost three years for this sweet family to get the diagnoses. Had doctors known sooner what was going on, they could have done a better job of slowing little Samantha’s seizures. It is only my opinion, but this kind of thing should never happen here in America, or anywhere else for that matter. Vanessa must have felt helpless until she received the help of the physician in Colorado. This may never have happened if not for the help of Mary Ann Sloan.
I can only imagine the mixture of feelings at this point. The mystery had been solved and a diagnoses was found. It had taken so long and ended with the family being told that there is no cure. No hope. Why is it taking so long for change to occur? The answer is complex, I know!
As one would expect, and as time went on, Sam’s health would deteriorate. Samantha was constantly in the hospital with Pneumonia. It was so bad that, according to Vanessa, they couldn’t leave the house without her getting it. Many difficult days were faced. As Sam continued to get worse, there were difficult decisions that would have to be made. These are the same decisions that many parents of Batten warriors have to make. Only in this case, we are talking about their little ”Giggle Box”. Vanessa put it to me like this,
“As Sam got worse we had to make decisions on feeding tubes, taking her out of school, and getting her equipment to be able to get around. During all of this Sam was still giggling and happy about what life was handing her. By the age of 5 years old Sam could not eat on her own without choking. We scheduled the surgery for a feeding tube. We fought with the insurance (company) to get a walker, a wheelchair, and a bath chair. She started to go blind but still loved listening to her Disney movies.”
These kids and their resilience! How they take things in stride. How the parents look for their smiles and continuing laughter. How devastating it is when these things cease to happen. A warrior always battles to the finish. Until they have given everything that they have to give. All of these children are just so amazing to me. We give them the title of a warrior prince and princess for a reason. Their lives are the sweetest of stories.
The time would eventually come when Vanessa would have to make one more important decision. That was whether or not to put little Samantha on a hospice program at the time that she did. She would later reflect that it was an excellent decision to do so. The hospice team was so helpful in making Sam as comfortable as possible. This is what Vanessa had to say about the hospice program at UNMH, “Our hospice team was amazing. We used the hospice through UNMH. It is called the Mariposa Program. We were blessed with an amazing nurse by the name of Cynthia Baber. We never had to leave the house once we got on the hospice program. The doctor and nurse always came to us. We were able to make Sam’s final days much more comfortable.”
This story is focused on the teamwork and mutual love that Vanessa and Julia have for Samantha, however there are others that care about her deeply. Samantha has a brother and sister through her father. Sam’s little sister Nate’ is only nine months younger than she is. According to Vanessa, they giggled and fought like sisters do! She especially loved her big brother, Nathaniel, and really looked up to him. One other person that I would like to mention is Vanessa’s brother Carlos. He was also someone that Vanessa would tell me was a huge part of little Samantha’s life. When the family was granted a Make-A-Wish trip to Disney World, Carlos made the trip with them.
The family was able to make lots of sweet memories with little Sam, The Giggle Box. Then, it was time for her to be set free and to receive her reward. Sam gained her wings at home with her beautiful family and friends by her side. That was on June the 9th, 2014. When informed about Sam’s passing Dr. Laoprasert called the family. Crying, he said that he was sorry that he could not do more. In fact, he had done an incredible job and more than any other had been able to do. That’s my kind of doctor. Little Sam’s family decided to have her cremated. Samantha now stays with the one who held her for the very first time. That would be grandma Julia. This is beautiful to me!
Something that amazes me is this. Even with all the appointments and extra care that was required, Vanessa stayed in college. Not only did she attain her Bachelor’s degree, but her Master’s degree as well. The heartache and added stress did not deter her. Vanessa’s final exams took place the week of Sam’s passing. She has acknowledged, and I would agree, that it would not have been possible without the sacrificial help of her mother Julia. That is a special kind of mom and that is what being a family is all about.
Samantha, you will never be forgotten and you will always be your family’s little Giggle Box. You are a precious little warrior princess. You are flawless, and will be for all of eternity!
#Awareness, #Funding, #Research, #Battle Batten Disease, #Find A Cure, #Not That Rare.
The love and respect that I have for those that deal with Batten Disease. It is not something that I can completely explain. Maybe it has something to do with my own personality. I find that as I get older, the sensitive nature that is part of who I am continues to deepen. Is it really me though? Or is it the activities that I find myself involved in these days? Maybe it is the grandfatherly instincts in me that come with my ever advancing age. Maybe, but I really think that it’s these kids. It is also their families.
Can you imagine? All you ever wanted to do is to get married and raise a family. You wanted children. You wanted them to grow up and accomplish much in their lifetime. Little league or girls softball. Maybe gymnastics or playing an instrument in the school band. You had a plan for academics and you wanted your child to go to college. A doctor or a nurse maybe. There is nothing that you wouldn’t do to help get that little person to where they would succeed. There is all that, but for now you were just enjoying each moment. Maybe things hadn’t come about through the best of circumstances but you had that most perfect little face in front of you now. That little person was the center of your world and you had a general idea of how you wanted things to go.
Part or maybe all of your day was spent observing all of those cute and very precious behaviors and tendencies that pointed to that little personality. That personality that belonged only to your very own son or daughter. Things were on track and moving right along. And then, things began to go horribly wrong. You began to see signs that your child was not in perfect health. Maybe, the first thing that really made you take notice was seizures. Maybe it would be difficulties in learning or issues with your child’s vision. Something wasn’t right and you sought answers from those that you trust most. People from the medical community. Eventually you get the answer and it leads to your devastation. Your child has a rare and fatal disease. Confusion and despair take hold of you but they become squashed to a degree by love and determination. You forge ahead.
You are asked to take a journey along with your child. Some families have to take that journey more than once. Although you are faced with the reality that the disease is fatal, you hope and pray that a cure can be found. Perhaps even just a form of a treatment or an alternative that will extend your baby’s life or improve the quality of life. There is absolutely nothing that you won’t do to help that little person in your life.
I had a friend on Facebook bring up a term once that I have used before on more than one occasion. Shannon Mason used the term “Undying Love”. She said that “all we can do is to show these kids our undying love.” The parents of children with Battens and other rare diseases show us, through example, what it is like to show that type of love to a child. Working through the constant heartache while putting one foot in front of the other in order to give the best possible care to their Batten warrior. It is a rare kind of devotion. It is one that is unlike any that I have seen. Maybe it is my own devotion to my special son that aides in the sensitivity. It is, however, my observations that there are only a few places, such as the Batten community, where this kind of devotion is displayed.
My next story is about a person who is an important part of the Batten Disease community. She has taken this journey once with one of her daughters. She is the mother to two girls, and yes, she is also taking this journey with her other daughter as well. In so doing, she is showing us the rare type of devotion that I want to capture in this story. To me, her story is extraordinary.
This story takes place in Istanbul, Turkey. Istanbul is a place that is rich in culture and history. It’s origin dates back to the very early centuries of civilization and at one time it was the eastern capital of the Roman Empire. This city, which was formerly Known as Constantinople, was at one time named after Constantine the Great. In the research that I did it was stated that the city hosts a population of 14.7 million people. That makes it the 7th most populated city in the world!
It’s strategic position geographically makes its railways critical to Europe and the Middle East. Its coastlines host the only sea route between the Black Sea and the Mediterranean. The city came to be known as the European Capital of Culture and in 2015 it would be the 5th most popular destination for tourism in the world. Istanbul has the appearance of being a most beautiful place.
It seems that with a population that large there are a lot of stories that could be told. Imagine the number of families with their own story. You know me. I have a specific story in mind and that story is about a big part of Kadriye Hacıoğlu’s life. Her story centers around her two warrior daughters. One whose name is Melis and the other whose name is Cemrenur. Kadriye’s devotion to both of her daughters is of a rare kind and is so out of the ordinary!
I have had certain people in mind ever since I started doing these stories and Kadriye is certainly one of them. She is a very sweet lady that has been through so much. She is a champion for the other people in the Batten community and she seeks to spread awareness through her Facebook page. She also maintains a page that is specific to Batten Disease. It is named NCL (nöronal ceroid lipofuscinosis) BATTEN DİSEASE.
I was a little bit hesitant to start because Kadriye does not speak English and I barely speak English (laughter please). She primarily uses the interpreting feature on Facebook to communicate and I thought that it would be a bit of a challenge. I recently did a post informing Batten families that I would love to tell their stories. Kadriye responded like as to say, Hey Greg, I am over here! This makes me smile! We both had it in mind then. She has family that is fluent in English and that helps both of us. And so away we go!
Kadriye was born in Istanbul in 1974. As she was growing up, she dreamed of the time that she would have a family. She wanted to be a mother and one day her wish would come true! She would marry in 1991 and Kadriye and her husband would soon begin a family.
There is nothing like a mother’s love, and that is especially true when it comes to the love between a mother and a daughter. Kadriye was so excited when she delivered her beautiful baby girl on February the 10th, in 1996. The young couple would name their new baby girl Cemrenur. Cemrenur was so perfect, and she was a perfectly beautiful baby. So healthy and flawless. She would have dark brown hair and brown eyes to match. Yes, that is right. She was their brown eyed girl. Kadriye took great care in choosing the name of her newborn baby. Cemrenur means “fire that drops on the earth” in the turkish language and Kadriye felt that the most perfect gift had fallen into her life. Cemrenur was a “happy baby and full of smiles.” As she began to grow, her father and mother began to think about the plans that they had for her. As they looked at her, Cemrenur’s parents could only visualize a future of health and well being as they watched their little girl play. She brought them so much joy and they would make plans to expand their little family.
Their joy would soon be multiplied by two as Kadriye conceived and would soon deliver their second child. When Cemrenur was a little over a year and a half old, this little family would welcome the addition of a new baby girl. Her name was Melis, which means “honey bee”. Their sweet little honey bee would come into this world on September the 2nd, in the year 1997. Oh my goodness! Kadriye was so excited. Her new baby girl would grow up to have blond hair and blue eyes. She was absolutely beautiful. She was perfect in every way. She had all her fingers and toes and her covering was unblemished and flawless. Not only was there one but two princesses in the house. With this, Kadriye had received everything that she had wished for. She was so happy! She was a mother with two beautiful daughters. As a mother, Kadriye would make plans for her kids future and she would have dreams. Dreams of a wonderful life with them.
Cemrenur and Melis were sisters. They loved each other, both each in their own little way. Their play time was simple because they were yet so small. It was innocent fun and it would begin to lead to a bond between the two of them. They were inseparable. Their parents would look on with joy and amazement. Their family was complete and Kadriye’s dreams had come true. Then, things would change.
Kadriye was unaware at the time but she would have to go through a transition in life. One that would both change and transform her existence. She would still be the mother of two beautiful daughters for all of eternity, however there would be a drastic change in both hers and her family’s circumstances. A mother? Yes, forever. Now though, she would begin to take on the role of a caregiver and advocate. Not by choice, but by necessity and with purpose.
At two and a half years of age Cemrenur would have her first seizure. Can you imagine the concern that her parents felt at that time? Things were about to change drastically for this young family. She was taken to the hospital and treated. Eventually, Cemrenur had several tests performed on her which included an MRI and a skin biopsy. The results would lead to a trauma that has lasting results. Shock and despair came with the news that Cemrenur had a rare and fatal disease. Neuronal Ceroid Lipofuscinosis type 2 (CLN2). She had Batten Disease. No cure. No hope. The only thing that could be done at that time is to use medication in hopes of controlling the seizures. Parents are often told by doctors that their child will live from 6 to 12 years of age with this variant of Battens.
As with any other parent, Kadriye would focus on how to care for her princess. How to battle the disease. She had so many questions at that time and she would not sit idle. Instead she learned everything that she could in order to combat the disease as best she could. Looking at Cemrenur at that time you would not know where the battle would take her and what a warrior princess she would become. Kadriye recalled that before Batten Disease little Cemrenur loved to swim and go for drives in the car with her parents. She loved to eat and her favorite food was vegetable soup. She was so healthy, but Batten Disease would take that all away from her.
A question that any parent would ask is, “what about my other child”? Melis looked so healthy and so Kadriye felt that in all likelihood her baby girl would be free and clear of the disease. One day Melis seemed to be too quiet for her parents comfort. They decided to have the doctor look at her just to make sure that all was okay. The doctor decided to have the medical team perform the same tests that they performed on Cemrenur. Unless you have experienced it yourself, you can only imagine what the response was. Total and complete devastation. Little Melis tests came back positive. She had (CLN2) Batten Disease as well. Melis started her battle at age four. Kadriye told me in very simple terms how it was that she felt with this news. Quote (with proper translation): “I felt that my life had ended.” Perhaps not quite as rare as the disease itself is the incident of having more than one warrior in a single family. Whereas all Kadriye’s dreams had come true with the birth of her miracle babies, they had almost all at once been taken away.
“When they both got sick and unable to walk, I used to play music, and take them one by one in my arms and dance with them. They both laugh and laugh when we dance.” Oh my goodness! Can you imagine that scene?
Kadriye also recalled a time when the disease had not yet affected Melis to a large degree. It had, however, greatly affected Cemrenur’s mobility. Kadriye remembers that little Melis sensed that something was wrong. Innocent Melis went into the kitchen and gathered up all the things that she thought might help her big sister. Things like cooking oil and flour. All the things she felt might work as a remedy. When Kadriye entered the room, she found them both laughing. Sisters forever! How sweet and adorable was that!
The memories for Kadriye about Melis are few though because as they say concerning Batten Disease, “First it takes the childhood and then it takes the child. I have no doubt though that although the memories are few, they are precious and priceless to Kadriye and her sweet family.
In 2003 Melis was placed in intensive care due to seizures that had become relentless. She was there for 25 days. How incredibly difficult!
When Melis was only six years old, her precious little life on this planet ended. She gained her angel wings because of Batten Disease. Kadriye lost her little Honey Bee.
When Kadriye and I chat, we always address each other as “my friend”. As I was chatting with her and getting details about Melis, I paused and said to her, “Kadriye, I am so sorry”. At the same time I was searching for the the little emoji with the tears streaming down it’s face but I could not find it. Before I did, She replied back with, “I know my friend”. She understood what I was feeling at that moment. Then she said, “I hate Batten Disease”. And with it, she had included the emoji that I had been looking for. All that I could say in response was that “I do too” (hate Batten Disease). By that time, I had found the crying emoji and included it. I do hate Batten Disease but I love the children and young adults that battle it so bravely.
I do not pretend to know what it is like to lose a child of any age. I can only imagine what one feels. I have written a couple of times about what it might be like to lose our special guy Benjamin. How empty the house would seem. All his personal belongings that were at one time so important to him. Sitting there unattended and unused. The Batten parent is faced with that very thing only to a greater degree. All the extra work and continuous effort that goes into caring for a child with the disease. All the equipment that was once needed for the child’s care and survival now sitting idle. Then again, Melis was only six years old. She had just begun her battle. She had just begun to live. Faced with all the emotions of losing Melis, Kadriye had to press on. As she put it, “I had to stay up for Cemrenur and to fight this disease.” And so she would! I can’t tell you the amount of respect that I have for her.
It seems that in at least a couple of the stories that I have Written about, the story includes a broken relationship for the parents. Maybe it is in part the strain of dealing with the disease on young couples. Or perhaps it is just that relationships don’t always survive. In Kadriye’s case, her marriage would end in divorce. Life happens but I wish it didn’t always have too! Kadriye would move into her mother’s house with Cemrenur where she receives her mother’s help.
Cemrenur’s battle continues. Remember what her name means? It means, "fire that drops on the earth". As I was writing this blog, I was trying to do the math in my head concerning Cemrenur’s age. She was born in 1996! That means that she is now 21 years old. That means that in terms of years, she has battled more than any other Batten Warrior with CLN2. In fact, she is the longest living person with CLN2 to date. She defines the term warrior. Kadriye created an intensive care area in her mother’s house for Cemrenur’s needs. She has a device that helps her with her breathing. Together, her and her sweet mother, Sabriye, provide round the clock care for Cemrenur. During the day Sabriye takes care of the Princess while Kadriye gets a few hours of sleep. Then, during the night Kadriye provides the care that is needed. This is pure devotion. This is a rare kind of devotion. I can just picture this entire scene in my mind. A mother and her child in the dark of the night. In a country far away from here. A bond that is like none other. The tear factor (my little test). This story passes the test also. Maybe more than any other. They all do! “Undying love”. Cemrenur your life is precious and you are so worth every bit of care that you receive.
To the cynical and uncaring, telling these stories have no value. To them, I suppose that the world is just about the survival of the fittest and things like this are just too bad. I have also heard it said over and over that these stories are sad. You know what? There is an element of truth to that but you need to look a little closer and think things through. What lessons are there to be be learned? What is there about this pure type of devotion that is displayed by these families? Can’t we all benefit from knowing about these things? Shouldn’t they be honored for their sacrifices?
I have a Facebook friend named Lisa Bertelsen. She has, for me, turned out to be a really pleasant surprise. I have recently come to find out that she is like a daughter to my highschool sweetheart, Amber Warnock. Amber died from cancer not that long ago. She was a warrior in both life and in death (until we see each other again). Anyway, I had no idea, but Lisa is a regular reader of my blog. She is a pediatric nurse and a mother to two boys with Autism. Her and her attractive family live in California. She had recently left a couple of comments about my blogging, one of which I want to share. It fits so nicely here,
“...we appreciate you and the families telling these beautiful heartfelt stories of life and loss! So many times children pass away and they are forgotten and they shouldn't be! They are IMPORTANT, their lives MATTER! I find the stories so heartfelt! Yes definitely sad because they are taken from us so soon but the love these families have for these beautiful children goes far and beyond any regular love! These Children and families have made a permanent mark in my heart because of the stories you and the families share. Thank you all for sharing Them! I know it can't always be easy but it is a great way for us, the world, to know your children on a deeper level without ever meeting them. This in turn makes their memory never die, never be forgotten!”
Kadriye, you and your beautiful family demonstrate through your actions all the things that Lisa mentioned in her comment. Your story will never be forgotten. NEVER! Nor will your beautiful girls.
Kadriye continues to care for Cemrenur, but she does even more than that. She is connected with the world through social media and is a constant source of encouragement to other families who face Batten Disease. She raises awareness through her Facebook pages and keeps on top of advancements in research and treatment. She makes others aware of these as they happen. As she puts it in her exact words after translation,
“I know that currently there is not a cure for Batten disease. Since it is a rare disease there is not much known about it. But things change, nowadays people are more aware of it. I see some ongoing scientific research news about the disease, although it seems too slow to me.
“In Turkey I am in touch with specialist doctors who work on rare diseases and I try to follow the research news through them too. I learned that in Turkey, government open a new funding for research on rare diseases. This gives me hope and I am hoping that one day kids will get cure for Batten disease too. I believe that families should get together and support each other, and put and effort on telling the disease to public so that much attention can be drawn.”
“Continuous hope. Quest to get some tried many medications in order to slow down the disease. But (there is) still not something we have about the disease.”
In closing, I have this to say. Kadriye, my friend, you are a wonderful person and your devotion to your daughters is of a very rare kind. I can only imagine that Cemrenur feels the love that you have for her as you and your wonderful mother stay by her side each and every day. Not only that, but Melis watches from her heavenly home and knows how much that you miss and love her. You not only love your daughters but you also love every child that has been afflicted by this monster called Batten Disease. I know that you will not only continue to fight for Melis and Cemrenur, but also for every one of these brave little warriors. Until there is a cure. We will always be friends and I am so happy for that. I am so glad that we could do this. What a beautiful family you all are. I appreciate getting a chance to meet you even from such a long distance. Thank you SO much!
Nadir Bir Bağış
Orijinalinden Google Translate kullanarak çevrildi
Batten Hastalığı ile uğraşanlara olan sevgi ve saygı. Bu tamamen açıklayabileceğim bir şey değil. Belki benim kişilikimle ilgisi vardır. Yaşlandıkça, kim olduğumun hassas doğası derinleşmeye devam ediyor. Gerçekten ben miyim? Yoksa bu günlerde kendimi ilgilendiren aktiviteler mi? Belki benim ilerleyen yaşımla gelen, dedeler içgüdüleri budur. Belki, ama gerçekten bu çocukların olduğunu düşünüyorum. Aynı zamanda aileleridir.
Hayal edebilirsiniz? Tek istediğin evlenmek ve bir aile yetiştirmekti. Çocuk istemiştin. Onların büyümelerini ve yaşamları boyunca çok şey başarmalarını istediniz. Küçük lig veya kızlar softbolu. Belki jimnastik veya okul grubunda bir enstrüman çalmak. Akademisyenler için bir planınız vardı ve çocuğunuzun üniversiteye gitmesini istediniz. Belki bir doktor veya hemşire olabilir. O küçük insanın başarılı olacağı yere gelmesine yardımcı olmak için yapmayacağın hiçbir şey yok. Bunların hepsi var, ama şimdilik sadece her anın tadını çıkarıyorduk. Belki en iyi koşullarla işler gelmemişti, ama şimdi şu en mükemmel küçük yüzünü önünüzde gördünüz. O küçük insan dünyanın merkeziydi ve işlerin nasıl gitmesini istediğinize dair genel bir fikriniz vardı.
Kısmen ya da belki de bütün gününüz, o küçük kişiliğe işaret eden bu sevimli ve çok değerli davranış ve eğilimleri gözlemleyerek harcanmıştır. Sadece oğlunuza veya kızınıza ait olan kişilik. İşler yolda gidiyordu ve birlikte hareket ediyordu. Ve sonra şeyler korkunç şekilde ters gitti. Çocuğunuzun mükemmel sağlıkta olmadığını gösteren işaretleri görmeye başladınız. Belki, gerçekten fark ettiren ilk şey nöbetlerdi. Belki öğrenmede zorluklar veya çocuğunuzun vizyonuyla ilgili sorunlar olur. Bir şey doğru değildi ve en güvendiğiniz kişilerden cevap arıyordunuz. Tıp camiasından insanlar. Sonunda cevabı alırsın ve yıkıma yol açar. Çocuğunuzun nadir ve ölümcül bir hastalığı var. Karışıklık ve umutsuzluk sizi tutun, ancak sevgi ve kararlılıkla bir dereceye kadar ezilirler. İleriye dövüşürsün.
Sizden çocuğunuzla birlikte bir yolculuğa çıkmanız istenir. Bazı aileler bu yolculuğu birden çok kez almak zorundadırlar. Hastalığın ölümcül olduğu gerçeğine karşın, bir iyileşmenin bulunabileceğini umar ve dua edersiniz. Belki de bebeğinizin ömrünü uzatacak ya da yaşam kalitesini artıracak bir tedavi veya alternatif bir biçim bile. Hayatında o küçük insana yardım etmek için yapacağın hiçbir şey yok.
Facebook'ta bir arkadaşımın, daha önce bir keresinde kullandığım bir dönemi yetiştirmesini sağladım. Shannon Mason "Undying Love" terimini kullandı. "Yapabileceğimiz tek şey bu çocuklara sonsuz sevgimizi göstermek" dedi. Çöp Kutuları ve diğer nadir hastalıkları olan anne-babalar bize bir çocuğa böyle bir sevgiyi göstermenin nasıl bir şey olduğunu gösteriyor. Batten savaşçısına mümkün olan en iyi bakımı sağlamak için bir ayağını diğerinin önüne koyarken sürekli kalp ağrısı ile çalışın. Bu nadir bir bağlılıktır. Gördüğümlerden farklı bir şey. Belki de özel oğluma olan bağlılığım, duyarlılığın yardımcısıdır. Bununla birlikte, benim gözlemlerime göre, bu tür bağlılığın sergilendiği Batten topluluğu gibi yalnızca birkaç yer var.
Sonraki hikayem Batten Hastalığı topluluğunun önemli bir parçası olan bir kişiyle ilgilidir. Bu yolculuğunu kızlarından biriyle bir kez almıştır. O iki kızın annesidir ve evet, aynı zamanda diğer kızıyla da bu yolculuğa çıkıyor. Bunu yaparken, bize bu hikayede yakalamak istediğim nadir tür bağlılığı gösteriyor. Bana göre hikayesi olağanüstü.
Bu hikaye İstanbul'da gerçekleşir. İstanbul, kültür ve tarih açısından zengin bir yer. Kökeni medeniyetin ilk yüzyıllarına dayanıyor ve bir zamanlar Roma İmparatorluğu'nun doğu başkenti olmuştu. Eskiden Konstantinopolis olarak bilinen bu şehir, bir zamanlar Constantine the Great adlı eserdi. Yaptığım araştırmada kentin 14.7 milyonluk bir nüfusa ev sahipliği yaptığı belirtildi. Bu, dünyanın en çok 7 yerleşim yeri olmasını sağlıyor!
Demiryollarını coğrafi olarak Avrupa ve Orta Doğu için kritik yapan stratejik konum. Sahili, Karadeniz ile Akdeniz arasında tek deniz yoluna ev sahipliği yapıyor. Kent Avrupa Kültür Başkenti olarak bilinmeye başladı ve 2015'te dünyanın turizm için 5. en popüler yer olacaktı. İstanbul, en güzel bir yer olma özelliğini taşıyor.
Öyle görünüyor ki, bu kadar büyük bir nüfusla söylenebilecek çok sayıda hikaye varmış gibi görünüyor. Kendi hikayelerini içeren ailelerin sayısını düşünün. Beni tanıyor musun. Aklımda bir hikayem var ve bu hikaye Kadriye Hacıoğlu'nun hayatının büyük bir bölümü ile ilgili. Hikayesi, iki savaşçı kızı etrafında toplanmıştır. Melis adını ve diğeri Cemrenur olan adını. Kadriye'nin her iki kızına verdiği özveri nadir bir tür ve olağan dışı!
Bu hikayeleri yapmaya başladığımdan beri bazı insanlar akılda tutmuştum ve Kadriye kesinlikle onlardan biri. O çok tatlı bir bayan. Batten topluluğundaki diğer insanlar için bir şampiyon ve Facebook sayfasında farkındalık yaratmayı amaçlıyor. Ayrıca Batten Hastalığına özgü bir sayfa hazırlıyor. Adı NCL (nöronal seroid lipofuscinosis) BATTEN DİSEASE'dir.
Kadriye ingilizce bilmediğinden ve zor İngilizce konuştuğu için başlamak biraz tereddütlüydü (kahkahalar lütfen). O öncelikle iletişim kurmak için Facebook'ta çevirme özelliğini kullanıyor ve bunun biraz zor olacağını düşünmüştüm. Geçenlerde Batten ailelerine hikayelerini anlatmayı çok isterim dedim. Kadriye, "Hey Greg, ben buradayım" demekle karşılık verdi! Bu beni gülümsetiyor! O zaman ikimiz de akılda kaldık. İngilizce bilen ailesi var ve ikimiz de yardımcı oluyor. Ve çok uzaktayız!
1974 yılında İstanbul'da doğan Kadriye, büyürken bir aileye sahip olma vaktini hayal etti. Bir anne olmak istedi, bir gün onun isteği gerçekleşti! 1991'de evlenecek ve Kadriye kocası yakında bir aileye başlayacaktı.
Annenin aşkı gibi hiçbir şey yoktur ve bu özellikle anne ile kızı arasındaki sevgiyle ilgili doğrudur. Kadriye, güzel bebek kızını 1996 Şubat ayında 10 Şubat'ta teslim aldığında çok heyecanlıydı. Genç çift, yeni bebek kızını Cemrenur olarak adlandırıyordu. Cemrenur çok mükemmeldi ve çok güzel bir bebekti. Çok sağlıklı ve kusursuz. Koyu kahverengi saçları ve kahverengi gözleri vardı. Evet bu doğru. Kahverengi gözlü kızlarıydı. Kadriye, yeni doğan bebeğini seçerken çok dikkat etti. Cemrenur, "yeryüzüne düşen yangın" türk dili anlamındadır ve Kadriye en mükemmel armağanın hayatına düştüğünü düşünmüştür. Cemrenur "mutlu bir bebekti ve gülünç doluydu" dedi. Büyümeye başlayınca, babası ve annesi onun için sahip olduğu planları düşünmeye başladı. Cemrenur'un annesi ve babası ona bakarken yalnızca küçük kızlarının izledikleri sağlık ve refahın geleceğini canlandırabilirdi. Onlara o kadar çok sevinç kazandırdı ve küçük ailelerini genişletmeyi planlıyorlardı.
Onların sevinci yakında Kadriye'nin tasarladığı gibi ikiye katlanacak ve yakında ikinci çocuğunu teslim edecekti. Cemrenur bir buçuk yaşından biraz önce olduğunda, bu küçük aile yeni bir bebek kızı eklemeyi memnuniyetle karşılamıştı. Adı Melis, yani "bal arısı". Tatlı küçük bal arısı 2 Eylül 1997'de bu dünyaya gelecekti. Aman Tanrım! Kadriye çok heyecanlıydı. Yeni bebeği sarışın saçları ve mavi gözleri yetişirdi. Kesinlikle çok güzeldi. Her yönden mükemmeldi. Tüm parmakları ve ayak parmakları vardı ve kaplaması kusursuz ve kusursuzdu. Evde sadece bir ama iki prenses var mıdı. Bunun üzerine Kadriye istediği her şeyi almıştı. O çok mutlu oldu! İki güzel kızı olan bir anneydi. Bir anne olarak Kadriye, çocuklarının geleceği için planlar yapardı ve hayalleri olurdu. Onlarla harika bir hayat hayalleri.
Cemrenur ve Melis kızkardeşlerdi. Her ikisi de kendi küçük yollarıyla birbirlerini severlerdi. Oyun saatleri basitti, çünkü çok küçüktülerdi. Bu masum bir eğlencelikti ve ikisi arasında bir bağ kurmaya başlayacaktı. Ayrılmazlardı. Ebeveynleri sevinç ve şaşkınlıkla bakarlardı. Aileleri tamamlanmış ve Kadriye'nin hayalleri gerçekleşmişti. Sonra şeyler değişecekti.
Kadriye zamanında habersizdi, ancak hayatta bir geçiş geçirmesi gerekecekti. Her ikisi de varlığını değiştirecek ve değiştirecek olanı. Her zaman sonsuza kadar iki güzel kız çocuğunun annesi olurdu, ancak hem oğlunun hem de ailesinin koşullarında ciddi bir değişiklik olurdu. Anne? Sonsuza dek evet. Ancak yine de bakıcı ve savunucunun rolünü üstlenmeye başlayacaktı. Seçimle değil, gereklilikle ve amaca uygun olarak.
İki buçuk yaşında Cemrenur ilk nöbet geçirirdi. O zaman ailelerinin duyduğu endişeyi hayal edebiliyor musunuz? Bu genç aile için her şey değişmek üzereydi. Hastaneye kaldırıldı ve tedavi edildi. Sonunda, Cemrenur'un üzerinde bir MRI ve cilt biyopsisi içeren birkaç test gerçekleştirildi. Sonuçlar kalıcı sonuçlar veren travmaya neden olur. Şok ve umutsuzluk, Cemrenur'un nadir ve ölümcül bir hastalığa sahip olduğu haberiyle geldi. Nöronal Seroid Lipofuscinosis tip 2 (CLN2). Batt Hastalığı vardı. Tedavi yok. Umut yok. O zaman yapılabilecek tek şey, nöbetleri kontrol etme umuduyla ilaç kullanmaktır. Ebeveynler, çoğu zaman doktorlar tarafından çocuğunun 6 ila 12 yaş arasında Battens'in bu varyantıyla yaşayacağı söylenir.
Başka herhangi bir ebeveyle olduğu gibi Kadriye de prensesi nasıl bakım yapacağına odaklanacaktı. Hastalık nasıl savaşılır. O sırada pek çok soru vardı ve boşta oturmuyordu. Bunun yerine hastalığı olabildiğince iyi mücadele edebilmek için elinden gelen her şeyi öğrenmişti. Cemrenur'a baktığınızda o zaman savaşın nereye götüreceğini ve bir savaşçı prensesinin olacağını bilmiyordunuz. Kadriye, Batten Hastalığı öncesinde küçük Cemrenur'un yüzmeyi sevdiğini ve ailesi ile arabada sürmek istediğini hatırlattı. Yemek severdi ve en sevdiği yemek sebze çorbasıydı. O kadar sağlıklıydı ki, Batten Hastalığı hepsini ondan alacaktı.
Herhangi bir ebeveynden sorulacak bir soru "diğer çocuğumun hakkında" sorusudur. Melis çok sağlıklı görünüyordu ve bu yüzden Kadriye, bebeğinin özgürce ve hastalıktan uzak olacağını düşünüyordu. Bir gün Melis, anne-babasının rahatlığı için çok sessiz görünüyordu. Doktorun sadece her şeyin yolunda olduğundan emin olmak için ona bakmasına karar verdiler. Doktor, sağlık ekibinin Cemrenur'da yaptıkları testlerin aynısını yapmasına karar verdi. Kendiniz yaşamadıysanız, cevabın sadece ne olduğunu hayal edebilirsiniz. Toplam ve tamamen yıkım. Küçük Melis testleri pozitif çıktı. O da (CLN2) Batten Hastalığı vardı. Melis savaşı dört yaşında başlattı. Kadriye bana bu haberi nasıl hissettiğini çok basit bir şekilde anlattı. Alıntı (doğru çeviri ile): "Hayatımın sona ermiş hissettim" Belki de hastalığın kendisi kadar tek bir ailenin birden fazla savaşçısı olması olayı kadar nadir görülmemektedir. Tüm Kadriye'nin hayalleri, mucize bebeklerinin doğumuyla gerçekleşmiş olsa da, hemen hepsi bir defada götürülmüştü.
"İkisi de hasta olduğunda ve yürüyemediklerinde, ben müzik çalıp onları kollarımda tek tek alıp onlarla dans ederdim. Dans ederken de gülüp gülüyorlar "Aman Tanrım! O sahneyi hayal edebiliyor musun?
Kadriye, hastalığın Melis'i büyük ölçüde etkilemediği bir zamanı da hatırladı. Bununla birlikte, Cemrenur'un hareketliliğini büyük ölçüde etkiledi. Kadriye, küçük Melis'in bir şeylerin yanlış olduğunu hissettiğini hatırlıyor. Masum Melis mutfağa girdi ve kızkardeşine yardımcı olabileceğini düşündüğü her şeyi bir araya getirdi. Yemeklik yağ ve un gibi şeyler. Onun hissettikleri her şey çare olarak kullanılabilir. Kadriye odaya girdiğinde, ikisinin de güldüğünü fark etti. Kardeşler sonsuza dek! Ne kadar tatlı ve güzeldi bu!
Kadriye'nin Melis hakkındaki anıları az olsa da, Batten Hastalığı hakkında söyledikleri gibi "Önce çocukluk dönemini alır ve ardından çocuğu alır. Hiç şüphem yok ki anıları az olsa da, değerli ve paha biçilmez Kadriye ve tatlı ailesi için.
2003 yılında Melis acımasız hale gelen nöbetler nedeniyle yoğun bakıma alındı. 25 gün orada kaldı. Ne kadar zor!
Melis altı yaşındayken, bu gezegendeki değerli küçük yaşamı sona erdi. Batten Hastalığı yüzünden melek kanatları kazandı. Kadriye, küçük Honey Bee'i kaybetti. Kadriye ile sohbet ettiğimizde birbirimizi "arkadaşım" olarak konuşuruz. Onunla sohbet ederken Melis ile ilgili ayrıntıları öğrenirken durdum ve ona "Kadriye, çok üzgünüm" dedi. Aynı zamanda, küçük emojileri arıyordum, yüzünü aşağı akan gözyaşları vardı, ancak bulamadım. Yapmadan önce, "Arkadaşımı tanıyorum" diye yanıtladı. O anda ne hissettiğimi anladı. Sonra "Batten Hastalığından nefret ederim" dedi. Ve onunla birlikte, aradığım emojileri de eklemişti. Yanıt olarak söyleyebileceğim tek şey "Ben de yapıyorum" (Batten Hastalığından nefret ediyorum) idi. O zamana kadar, ben ağlayan emoji bulup dahil ettim. Batten Hastalığından nefret ediyorum, ama o kadar cesurca savaşan çocukları ve genç yetişkinleri seviyorum.
Herhangi bir yaştaki bir çocuğunu kaybetmenin nasıl bir şey olduğunu biliyormuş gibi davranmıyorum. Sadece birinin neler hissettiğini hayal edebiliyorum. Benjamin özel adamımızı kaybetmek nasıl bir şey olabilir diye birkaç kez yazdım. Evin ne kadar boş görüneceği. Bir zamanlar onun için olan tüm kişisel eşyaları onun için çok önemliydi. Orada gözetimsiz ve kullanılmayan oturuyor. Batten ebeveyni o şeyle daha büyük ölçüde karşı karşıya kalır. Hastalığı olan bir çocuğa bakmaya devam eden ekstra çalışma ve sürekli çaba. Çocuğun bakımı ve hayatta kalması için bir zamanlar gereken tüm ekipman boşta kaldı. Sonra tekrar Melis altı yaşındaydı. Savaşı başlamıştı. Yaşamaya başlamıştı. Melis'i kaybetme duygularıyla karşı karşıya kalan Kadriye, üzerine basmak zorunda kaldı. Söylediği gibi "Cemrenur'a ayak uydurmalı ve bu hastalıkla savaşmalıydım." Ve öyle yapardı! Onun için ne kadar saygı duyduğumu söyleyemem.
Anladığım kadarıyla yazdığım hikayelerin en azından birkaçında hikaye ebeveynler için bozuk bir ilişki içeriyor gibi görünüyor. Belki kısmen bu genç çiftlerde hastalıkla mücadele etmektir. Veya belki de sadece ilişkilerin her zaman hayatta kalması değildir. Kadriye'nin davasında evlilik boşanma ile sonuçlanacaktı. Hayat olur ama keşke her zaman da olmaz! Kadriye annesinin evine Cemrenur ile taşınarak annesinin yardımını alıyordu.
Cemrenur'un savaşı devam ediyor. Adının anlamını hatırlıyor musun? Bu, "yeryüzüne düşen ateş" anlamına gelir. Bu blog yazarken, Cemrenur'un yaşıyla ilgili kafamda matematiği yapmaya çalışıyordum. 1996'da doğdu! Bu şu anda 21 yaşında olduğu anlamına geliyor. Bu, yıllar itibariyle, CLN2 ile diğer Batten Savaşçılarından daha fazla savaştığı anlamına geliyor. Aslında bugüne kadar CLN2 olan en uzun yaşayan kişidir. Savaşçı terimini tanımlıyor. Kadriye, Cemrenur'un ihtiyaçları için annesinin evinde yoğun bakım alanı yarattı. Solunması ile ona yardımcı olan bir cihazı var. Birlikte, tatlı annesi Sabriye, Cemrenur'a 24 saat bakımı veriyor. Gün boyunca Sabriye Prensesle ilgilenirken Kadriye birkaç saat uyku çekir. Sonra, gece boyunca Kadriye gerekli bakımı sağlar. Bu saf bir bağlılıktır. Bu nadir bir bağlılıktır. Bu sahneyi aklımda sadece resimleyebilirim. Gecenin karanlığında bir anne ve çocuğu. Buradan uzakta bir ülkede. Hiçbir benzeri olmayan bir bağ. Gözyaşı faktörü (küçük testim). Bu hikaye de testi geçiyor. Belki de diğerlerinden daha fazladır. Hepsi yapıyor! "Ölümsüz Aşk". Cemrenur hayatınız değerlidir ve aldığınız her bit bakımına değer sizsiniz.
Alaycı ve çirkin insanlara, bu hikayelerin hiçbir değeri olmadığını söylüyorlardı. Onlara göre, sanırım dünyamız sadece en uygun kişinin hayatta kalması ile ilgilidir ve bunun gibi şeyler çok kötü. Ayrıca, bu hikayelerin üzgün olduğunu defalarca duyduğunu duymuştum. Biliyor musun? Bunun bir gerçekliği var, ancak biraz daha yakından bakmanız ve düşünmeniz gerekiyor. Öğrenilecek dersler nelerdir? Bu aileler tarafından sergilenen bu saf bağlılık hakkında ne var? Bunların hepsini bilmekten yararlanamayız mı? Onların fedakarlıklarından ötürü onurlandırılmamalı mıyız?
Lisa Bertelsen adlı bir Facebook arkadaşım var. Benim için gerçekten hoş bir sürpriz olduğu ortaya çıktı. Kısa süre önce, o benim lise tatlım, Amber Warnock için bir kızı olduğunu öğrenmek için geldim. Amber o kadar da önce kanserden öldü. Yaşamda ve ölümde savaşçıydı (birbirimizi tekrar görene kadar). Neyse, hiç bir fikrim yoktu, ancak Lisa blogumun düzenli bir okuyucusudur. Otizmi olan iki çocuğun pediatri hemşiresi ve annesi. Onun ve çekici ailesi California'da yaşıyor. Kısa bir süre önce bloglarım hakkında bir çift yorum bırakmıştı, bunlardan bir tanesi paylaşmak istiyorum. Buraya çok güzel uyuyor,
"... sizi ve aileleri, hayat ve kayıp bu güzel yürekten hikayelerini anlattığınız için teşekkür ederiz! Çoğu kez çocuklar geçerler ve unutulurlar ve olmamalıdır! ÖNEMLİDİR, hayatları önemlidir! Hikayeleri çok yürekten buluyorum! Evet, kesinlikle üzgünüm, çünkü bizden çok kısa bir süre aldık ama bu ailelerin sahip oldukları sevgi, bu güzel çocuklar için normal aşktan çok ve öteye gidiyor! Bu çocuklar ve aileler, siz ve ailelerin paylaştığı hikayeler nedeniyle kalbimde kalıcı bir iz bırakmışlardır. Onları paylaştığınız için hepiniz teşekkür ederiz! Her zaman kolay olmayabileceğini biliyorum, ancak bize, dünyaya, çocuklarınızı daha önce hiç tanışmadan daha derin bir şekilde tanımanın harika bir yoludur. Bu da onların hafızasını asla ölmeyecek, asla unutmayacak! "
Kadriye, siz ve aileniz, eylemleriniz boyunca Lisa'nın yorumunda bahsedilen her şeyi gösteriyor. Hikayen asla unutulmayacak. ASLA! Ne güzel kızların da yok olacak.
Kadriye Cemrenur'a bakmaya devam ediyor, ancak bundan daha fazlasını da yapıyor. O sosyal medya aracılığıyla dünyayla bağlantılıdır ve Batten Hastalığı'na maruz kalan diğer ailelere sürekli teşvik kaynağıdır. Facebook sayfaları aracılığıyla farkındalık yaratır ve araştırma ve tedavideki gelişmelerin üstünde durur. Başkalarını bu olaylardan haberdar eder. Çeviri sonrasında kesin sözcüklerini koyarken,
"Şu anda Batten hastalığının tedavisinin olmadığını biliyorum. Nadir bulunan bir hastalık olduğundan pek bilinmemektedir. Ama her şey değişiyor, günümüzde insanlar bunun farkındalar. Hastalık hakkında halen devam eden bazı bilimsel araştırma haberlerim var, ancak bence çok yavaş görünüyor.
"Türkiye'de nadir hastalıklarla uğraşan uzman doktorlarla iletişim kuruyorum ve araştırma haberlerini onlara da takip etmeye çalışıyorum. Türkiye'de hükümetin nadir hastalıklar üzerine araştırma yapmak için yeni bir kaynak açtığını öğrendim. Bu bana umut veriyor ve bir günlük çocukların da Batten hastalığına karşı tedavi edeceğini umuyorum. İnanıyorum ki aileler bir araya gelip birbirlerini desteklemeli ve hastalığın halka açıklanmasını emanet ve çaba göstererek dikkat çekilmelidir "dedi.
"Sürekli umut. Bazıları, hastalığı yavaşlatmak için birçok ilaç denedi. Ancak hastalığa ilişkin elimizde bir şey yok. "
Sonunda şunu söyleyecektim. Kadriye, dostum, harika bir insansın ve kızlarına olan bağlılığın çok nadir bir tür. Cemrenur'un, sizin ve harika annenizin her gün yanında kalması için sahip olduğunuz sevgiyi hissettiğini hayal edebiliyorum. Sadece bu değil, Melis onun göksel evinden seyrediyor ve ne kadar özlediğini ve onu sevdiğini biliyor. Sadece kızlarınızı sevmekle kalmaz, aynı zamanda Batten Hastalığı adlı canavarın maruz kaldığı her çocuğu da seviyorsunuz. Melis ve Cemrenur için değil aynı zamanda bu cesur küçük savaşçıların her biri için savaşmaya devam edeceğinizi biliyorum. Bir tedavi bitene kadar. Her zaman arkadaş olacağız ve bunun için çok mutluyum. Bunu yapabileceğimiz için çok sevindim. Hepiniz ne güzel bir aile. Bu kadar uzun bir mesafeden bile olsa sizinle tanışma fırsatı bulduk. Çok teşekkür ederim!
Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017. Titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017