“We did not know about the disease before it happened to us. The doctor said that the return from the illness will not happen and it is not cured. Our world was destroyed as a result. Now, we are trying to pass the rest of the time well. My daughter is an angel and it is so terrible to see the changes in front of my eyes.”
The mother of an Angel
I have written several times now concerning what a child’s life should be like. I never used to think about these types of things until I started to follow families that face Batten Disease. I notice children more now when they are around, and I observe their tendencies more often. You know what I mean. Right? The cute and innocent behaviors that they often display. Sure, there is naughtiness at times. That is human nature. Most of the time though, we observe innocent wonder and love that is reciprocated through actions that speak louder than words. Whereas I used to just notice children when they were in my midst, I now take the time to appreciate the gift that they are to us. Some can be more difficult to deal with than others, and some make you feel like you have an angel present with you!
A child’s life is supposed to be filled with innocent fun as life’s lessons are being learned. Sure, there will be doctors appointments along the way. Perhaps a surgery to fix a problem or maybe a broken limb that needs mending. We are crushed, though, when a larger issue appears. A child’s little face is free of the lines that we all wear as a result of life’s difficulties. Worry and deep concern are not generally part of our existence when we are little. That is the way that it should be! That is why we are so deeply saddened when disease affects a child’s life. When you are the parent, it brings more than sadness. It can bring devastation. We all, at some point, think about the things that we want for our kids. Good health, education, and success are some of the things that we think about. Maybe we observe our children’s character traits and that causes us to think big thoughts about what the future may hold. All of that, though, can be interrupted when things begin to go wrong The search for answers can lead you down a path that ends with news that is shocking. That kind of thing is what can bring real despair.
It is just so normal to want to have a family. It is what we were created to do and it is one of the things that we think about as we come of age. We see others go through the experience and it is often something that we long for. Maybe we have nephews and nieces that we love and as we marry, we look forward to raising children of our own. We see others enjoying the experience and we get so excited when it is our turn. Couples wait in anticipation as their little baby progresses and mom’s tummy grows. There are a few things that couples experience that will strengthen the bond between them. Having a child together is one of them. The legacy that we leave behind will be what we do for others, but it is, often times, also who we leave behind to carry on without us. You get the picture right? Children become our world! We are a little sad when they grow up and leave the house, however we are so proud, when they find success. There are many precious memories that get formed along the way and those last a lifetime.
A normal life for our children is what we anticipate, but things do not always go according to plan. In fact, sometimes things can go horribly wrong, and it can begin to happen with a single event. All of a sudden a family’s world can be turned upside down. It can start with a single occurrence, such as a seizure. Then, things that may have been noticed in the past start to fit into a puzzle that reveals a picture that is alarming. You receive the news. Your child has Batten Disease! There are, of course, many other rare diseases that affect children. There are also different forms of pediatric cancer that can take a child’s life. I focus on Batten Disease for a good reason. It is simply because I was made aware. Over time, and as I have begun to get to know people in the Batten community, I have been made aware of the details. Yes, there is sadness. However, the details of undying love and sacrifice displayed by the families have caused me to take notice. The stories have changed me and they have changed the way I think. The close bond that exists between the families within the Batten community has greatly impressed me. The only means by which I am able to relate to those in the community is by the fact that I am the parent of someone who has special needs. My own experience, though, stops short of things that are experienced by a family that is affected by Battens. I have the deepest respect for those in the Batten community, and I have considered it a privilege anytime I have been allowed to be a voice for one of the families. These kids lives are priceless, and the effect that they have on those of us that are watching is more than worth talking about.
This next story takes place in the country of Turkey. The city of Antalya in Turkey to be exact. Antalya is an extremely beautiful place and the people there are beautiful as well. The city appears to possess a mixture of old world beauty and modern day charm. Many of the pictures are breathtaking in appearance. There is no doubt but that modern culture is mixed with rich traditions that involve families. Family life is very important and the ties that bind families together are strong in Turkey. There are many events attended as a family unit, and spending time together as a family is what life is all about. Again, it is very normal and good to want a family of your own and that also was the desire of Hasan and Rukiye Berk. This story is about them and there angelic little daughter named Betül. Let’s start at the beginning. Beginnings always start with two people that fall in love and this one is no exception.
Marriage was not something that Rukiye thought about all of the time, although, it was something that she had wanted for her future. She did not know at the time, but she had met the man of her dreams while at a gathering of friends and family. Rukiye and Hasan looked at each other with interest and their future together had begun. They would begin by talking to each other over the phone and their relationship blossomed. They talked about the future and their plans began to revolve around one another. The conversations included marriage and they each talked to their families. A date was set and their life together began on June the 15th of the year 2013. They became man and wife. The Berks thrived as a couple and they were very happy together. Hasan and Rukiye talked about the future and all they wanted life to hold for them. Success and happiness together would include having children of their own. They worked hard at establishing themselves and they enjoyed married life together for a short while. Then, with much excitement, Rukiye became pregnant with their first child. They both were so happy, and both of their families were happy for them. The pregnancy went well and then it was time to welcome their new little one into the world. How exciting!
The date that would change the lives of this young couple was June the 6th in 2015. That was the day that their daughter was born in the city of Antalya. Their very first child. For parents, there is nothing like this experience. Their precious little bundle was a girl and they named her Betül. She was so perfect and she was perfectly beautiful. They felt like the world was theirs as they took turns holding their brand new baby girl. She had all of her fingers and toes and she was covered in brand new baby skin. She was flawless and without blemish, and most of all, she was their very own. They were so happy! As Betül looked at her new surroundings, you could see that she had the biggest brown eyes. They were so deeply brown that they looked almost black. They were beautiful just like she was and they would one day accent her long black hair. They named her in the belief that she would be so much like her mother as she continued to grow. I was curious about this name Betül, and so I searched the internet. The Urban Dictionary gave these meanings: Amazing, loving, beautiful, gorgeous, clean and a sweet girl or woman. That is exactly what the Berks had expressed to me concerning the meaning of her name. And in fact, as she continued to grow, she would be just like that. She was, and still is, an angel.
As she continued to grow, so did mom and dad’s love for her. Hasan would return from work each day to greet his little family which included his special love Betül and sweet wife Rukiye. He would not come home empty handed as he knew that his dear daughter was fascinated with balloons. Betül loves balloons. Hasan would bring her a balloon every day, and as she played, the room was filled with giggles and sounds of innocent laughter. Betül was and still is gorgeous and very sweet, just as they thought she would be. Early on, Betül progressed nicely and this left Hasan and Rukiye to wonder about the possibilities. What would their daughters life be like? They looked forward to all that the future held for her. She was so adorable and did the most adorable things. She would grow up and they would give her the best of everything that could be afforded. She would always have a foundation of love and support. That is until the day that she was grown and left to have a family of her own. Even then, she would always be the object of her parents affection.
Every parent expects some difficulties along the way but they are generally things that can be handled or fixed. It is different when we are talking about a fatal disease. Things started to change for this young family as soon as little Betül started to approach one and a half years of age. She had up to this point, showed all the signs of being a normal and happy toddler. The only problem was that as she learned how to walk, she was falling all of the time. This, more than one would expect. Then, at one and a half years of age, it happened. Betül had her first seizure. Seeing your child experiencing a seizure for the first time is the most alarming thing that can happen, and that was the case for Hasan and Rukiye. All of a sudden, the world that they felt that they were on top of was collapsing. They did what loving parents do, which meant consulting a doctor in order to get the answer that they sought. The couple even videotaped the occurrences to show to the doctors. They would soon see a neurologist that gave the initial diagnosis of myoclonic epilepsy. This is a very general diagnosis associated with abnormal brain waves that cause seizures. Further testing would be performed at the Antalya Akdeniz University Hospital, as the family was there for two days. It would reveal that little Betül’s brain showed signs that it was shrinking in size but the doctors did not want the Berks to worry at this point. They felt that the the findings could be inconclusive. This, however, is commonly known to be a symptom of Batten Disease. At this point though, the family did not even know that such a disease existed.
It was two months later that they would return to the doctor for another check-up, and it was then that it was decided that genetic testing should be ordered. The testing took place and unlike so many of the other stories that I have done, the results would come back in a timely manner. They would learn what was happening in only a months time after the blood work had been performed. Their world would be destroyed as the findings were revealed to them. Little Betül, the angel, had CLN1 Infantile Batten Disease. It was explained to the Berks that their precious little girl had a disease for which there was no cure. The disease was fatal. As one would guess, they were devastated and had a great breakdown. How could this be. She was so healthy at first, and then, in such a short time, everything had collapsed around them. All of a sudden, their plans for the future had been altered. I wonder which is worse? To gain the answer quickly, or to receive it after a lengthy search? The answer must be, that whenever it is received, the news is equally devastating. CLN1 Infantile brings with it a life expectancy from early to mid-childhood. Doing the research, that tells me no more than nine to eleven years old.
Just like with any other family receiving this news, there is a time when you are frozen by your own grief over someone you have not yet lost. And then, it is time to look for answers as to how to deal with such a dreadful diagnosis. The Berks searched the internet, and with that they would be linked with a community that, like the disease itself, they had not known it exists. This would happen as they ran across information on Batten Disease, and it included the name of my dear long distance friend, Kadriye Hacıoğlu. Kadriye has been established as a leader for the Batten community within Turkey, and really, worldwide. This comes through her own experience as the parent of not just one, but two children with Batten Disease. You see, she lost her beautiful daughter Melis to the disease, when Melis was very young. Her other daughter, Cemrenur, is a warrior of a princess. Cemrenur has lived longer than any child with CLN2 Batten Disease. She is now twenty-two years old and she continues to fight on. In addition to caring for her own Batten children over the course of many years, Kadriye is very actively involved in the lives of many Batten families worldwide through social media and she maintains a Facebook page called “NCL (nöronal ceroid lipofiksinoz) BATTEN Disease Hastalığı ile Mücadele ve”. When the Berks needed help in a time of crisis, Kadriye was there to embrace them from a distance. She was able to give them moral support and guidance like no one else is able to. She is amazing to me! My short chats with Rukiye has shown me that she loves and appreciates Kadriye and it is easy to understand why that is. Kadriye is able to understand like no one else because her empathy comes out of her own experience. I am so proud to call her my friend. Rukiye says that she wished that they had met under better circumstances, but as it is, they share a bond that only they can fully understand. I know that bond will last a lifetime.
Dreams can fade in an instant. Circumstances change and they can change our lives as a result. What was so simple for Hasan and Rukiye all of a sudden became so complicated. The original goal was simple. It consisted of just raising up Betül into the young lady that they would have her to be. Now, the goal involves fighting for her as she battles Batten Disease. To show her the undying love that I have talked about so often now. This while facing the heartbreak that has set in. My background and experience as a special needs parent can help me understand some things, but only to a degree. It was in a short chat that Rukiye made a simple statement. She stated that no one can understand what she is going through personally and in fact that is the truth. Family and friends may try to help but, in fact, it is difficult for us to know the depth of the heartbreak that has been experienced. I try so hard to show complete empathy for what people like the Berks are facing as a couple, and that is a big reason why I write these stories. I am so glad that the support of the entire Batten community exists for this family. That is why people like my friend Kadriye are so important. Rukiye and Kadriye talk frequently and Kadriye’s experience and ability to understand is so important to what they are going through.
I wish little princess Betül the best as she continues to battle Batten Disease. I am stating the obvious when I, once again, say that we need a cure for Battens and other rare diseases that affect children like Betül. She is such a darling little girl and a little treasure. How devastating it must be. Awareness is so important. Progress has been made in places like Turkey, as well as, here in America, but there is so much left to do. Kadriye is actively involved in trying to bring about change in her country. She is a warrior for people like the Berks. She states that there are some programs for Batten families, and there is even some research going on in her country. Still though, there are some doctors who do not yet know about the disease. Often times, children will be diagnosed and then, according to Kadriye, will be left to their own fate. It stands to reason that more services are available in the big cities where medical services are more accessible. She states that things such as physical therapy, medications, and nutritional services are provided by the government. There are, however, some families in the outlying areas that can’t be reached. Kadriye, along with some of the other Batten families, have formed an association. Their hope is to work together to bring about some positive changes. I think that their efforts mirror the types of things that are taking place in countries like the United Kingdom and also here in the United States. We are all working for the same thing. Greater awareness and more help for these beautiful children.
Again, I have talked about my own special needs son on occasion in order to try to relate to Batten families. The plain truth is that it is impossible to understand completely what it is like to be facing what they will go through. I do understand what it is like to be needed by someone who cannot care for themself, and I do understand what the bond is like. The extra effort that goes into the care that is needed. To be exhausted from the day and yet having to provide something that is unavailable by any other means. I have talked about what I think it would be like to lose my son and to be left with all of the personal effects that are so dear to him. He can be so loud when he plays due to his autism. What would it be like to all of a sudden be left in silence. I think that I would have to cling to all of the sweet memories as I looked at the space that has been vacated. This, while knowing that he has left for a much better place. We were told early in Benjamin’s life that there were signs that his condition is degenerative. He is now twenty-eight years old and we have no idea what his longevity will be. The course of his life is an unknown, whereas things are different for a child with Batten Disease. Parents are told right from the start that the disease is fatal. In a lot of cases, they are simply told to take their child home, and form as many memories as possible. I am so glad that some progress has been made.
There are some things that I just cannot know. What is it like to look into a child’s innocent face, and know what the future holds? I have read a lot of stories about the devastation that the diagnosis brings. A period of time passes and then, it is followed a by resolve to do the very best that the parent can to fight the monster that is Batten Disease. (Yes, there are many other rare diseases but Batten families represent all of the others very well!) I know that I repeat myself often but these stories are a mixture of heartache and undying love. That is what the Berks story is like. It is a story of tender love for little Betül, and the heartache that they face on a daily basis. Their love for her will never die. Just like with my friend Kadriye and her daughter Melis.They share a bond that can never be broken. Her days revolve around her daughter Cemrenur’s care and the care that she provides to others in the Turkish Batten community.
My perspective is strictly that of an outsider. I am always looking at what Batten children teach us about love and sacrifice. What they teach us about ourselves and the indomitable human spirit. Please forgive my naivety. What is it that we consider to be a big deal? You know what I mean? What things are really important? Some of the things that we complain about are so trivial compared to the circumstances that are faced with this disease. I have heard Batten parents say that they no longer sweat the small things in life. Maybe we should all be the same way. The way that these young children and young adults face the disease as they fight. How they often continue to smile until their bodies no longer allow them to. How resilient they can be as they battle. How they still possess that childlike joy even as they lose their abilities. It also seems that they teach their parents what they themselves are made of. They show us much about how to endure hardship and to keep going even when we feel like giving up. How to do what is necessary even on the worst days possible. Most of all, what they teach us about love. I talk about the bond that is created over and over again because it seems so important that I do so. The love that is formed as a result of the constant care and time spent together in the fight. Some of the stories contain details of tremendous sacrifice. I never want to over dramatize the details but it seems to me that the details can be dramatic. We all love our children but there seems to be a love that is formed on a deeper level between a Batten child and their caregiver. Tell me that I am wrong!
There are many families that have become dear to me through following children with Batten disease. (Tell me if this isn’t true for you also!) Some, of course, I have had greater contact with than I have others. One family that I have had more contact with is the Headricks from Tennessee, here in the USA. Alicia is one of the Batten moms that I try to talk about frequently. This, because I believe that the love that exists between her and her daughter Lydia exemplifies the type of love that I have sought to detail in these stories. The joy that exists on Lydia’s face is evidenced by her huge smile which can light up the room. The love that is felt for her by her mom is evidenced by her mother’s actions and her own words. I had once made a remark to Alicia about how adorable that I felt Lydia is. Alicia’s reply is something that I will never forget. This is what she said in response, “I know. I love her so much it hurts. It hurts really bad, Greg.” This comment left an impression on me. What is it like to love someone so much that it is painful to consider it? This is something that I have tried to answer for myself. It is the type of love that exists between a parent and a child with a rare and fatal disease. It is a depth of love that is felt, although it is not easily explained. This is the type of bond that, without a doubt, is being formed between little Betül and her parents. The fact that she is here for only a time must be painful, and their love for her must be incredibly strong.
It doesn’t matter what country we are from or the culture that we live in. In general, we all want the same kinds of things. We seek after success in whatever way that we measure success. We want health and happiness although we all realize that there will be obstacles to overcome. It is a normal thing to want a family and to want our kids to be healthy and successful. When something like Batten Disease comes along, it leaves us thinking that our world has fallen apart. Who can argue that, to a large degree, it has? It wasn’t that long after the Berks found out that their beautiful little girl was diagnosed with Battens that they contacted me. I think that they must have heard about the blog from Kadriye and they desperately wanted to share their story with others. I felt at the time that it was a little bit too soon to write about Betül because her story had just begun. Hasan and Rukiye, however, stayed persistent and I was so moved that they did so. This especially after seeing Betül’s pictures. She is a jewel of a little girl and I am so very sorry that Batten Disease has entered the lives of this family. The Batten community is very special and there is a bond between the families that only they can understand. I am so very glad that each family has the support and understanding that comes from sharing what they have in common. I am truly moved by each and every story and each family that I write about becomes dear to me. I am so touched by the Berks and their desire to share their journey with everyone. They are very special people. What I desire for them is that this experience would draw them closer together as a couple. That is what difficult circumstances should do. Draw us closer together.
Betül is an angel that was sent to her family. No one will impact the lives of the people that know her more than she will. This, even if her time on this planet is less than other people. These children change us and they teach us so much. I thought of some examples: How to serve more fully and how to love more deeply. How to move forward when times are difficult. How even a child could be stronger than we ever could imagine. How to smile on the most difficult of days and how to keep going when we are not at our best. Yes, there will be heartache. The sweet and beautiful things will always be remembered. Little Betül has a lot of fight left in her for this battle and I pray that she blesses her family with her presence for some time to come. There needs to be more attention drawn to rare diseases like Battens. More funding, more research, and a form of treatment that is affordable to families. In the meantime, I am convinced that these children are sent to us for a time and for a reason. Every battle against Batten Disease brings the uncertainty about how long the battle will continue. The one thing that is certain is that this particular battle is being fought by an angel. No matter what happens, Betül will always be that. She is an angel, and she is, one that was sent.
Blogger and Advocate
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!
Highlighting a previous blog that might interest you:
No Longer Alone - Kristiina's Story
What do you do when you receive some news about your most beautiful daughter and that news rocks your world? Where do you turn? The Bearman family would find the help that they needed from a community that they did not know existed!
How Did it all begin?
People do read it and I am glad that they do! How did I get started with all of this and why do I do what I do? I have done some slight upgrades and so here it is!
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
*Gönderilen Melek - Betül Berk’in Hikayesi
*The Angel that was Sent - Betül Berk’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
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