“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.