“That day, I finally got my closure. I finally got the opportunity to mourn, to die and to be born again, to hit the ground and to feel everything I needed to feel. I didn't even know what I was feeling in all that period of time before the diagnoses because I was so focused on finding the answers and helping her. After the diagnosis, I had the opportunity to process everything I needed to process and it was hard. It still is.”
I have a son who was born with special needs. Seizures, developmental delays, and autism are all part of his condition, but what he has is not necessarily terminal in nature. We could see almost from the very beginning that he was not meeting his milestones and we knew why that was. Our son Benjamin was genetically predisposed to this condition because there were others like him in our family history. We were young and never considered the fact that such an occurrence would be possible. This, even if we should have known better. Do we have any regrets? No, not at all. We have three sons and we love each one of them. The bond that we have with Benjamin is extremely close. For me, this son with special needs is part of my identity and part of who I am as a person. Benjamin is the most valued and honored member of our household.
When you have a child with special needs, the bond that is felt is most often very strong. I believe that the constant care required to help someone who can’t perform the basic functions for independent living does something. It creates a bond between the parent and the person with special needs that is incredibly strong. It is a bond that can never be broken. Not even in the case of one’s passing. If anything, losing someone with whom you have that strong of a bond creates a void that is painful to experience. The time spent together, the feelings that are created, the memories that are formed, all serve to create this incredible bond. Many times in my writing, I have used my own experience to try to relate to someone who cares for a child with an incurable and terminal disease. A disease like Batten. I am always careful to go on to say that the things that are faced by people in the Batten community are so much more difficult than anything that we have experienced. The more that I learn, the more I realize how true this is. That is why the love and respect that this writer has for people in the Batten community, and other rare disease communities, is off the chart strong.
A Mother’s Love
There are some really great fathers out there, that is for sure. Many times though, I have made the statement that there is no love like a mother’s love. I have also said that there is no love like that which exists between a mother and her daughter. Yes, for sure, the love between a mother and her sons is special, but there is an understanding and a strong bond that comes from being of the same gender. Many moms are best friends with their daughters for life. Think about how a bond is created between a mother and her child while that baby is carried in the womb. To know that life is inside of you, growing and developing. You are glad to feel the kicking and all the movement because you know that helps to indicate that things are well with the baby. Each kick and squirm is a reminder that there is a human life inside and that life will soon be your responsibility. A mom waits in nervous expectation, especially if she is new to the experience. The day arrives and with it comes the event that has been anticipated. Time in labor was the most difficult thing ever experienced, but it brought with it memories that could never be forgotten. It brings with it a baby that is your very own.
The event seems overwhelming, but then, it is finished and you are handed that little person that you have waited to hold for so many days. You have a daughter and she seems so perfect. In fact, she is perfectly beautiful. Even from the beginning, you think about what the future may hold for that little person that you are responsible for raising. You are nervous and excited all at the same time. The days spent together accumulate and the love for your child grows as each day passes. You are a girl and you love doing girl things. Now, you have a little girl that you plan on spending your life with,and you think about future events that might take place. Often times, a mom will not only have a daughter, but she will also have a daughter that develops into a beautiful friend. They become inseparable and the bond deepens. A child’s life should be care free. Their days should be filled with innocent fun as life’s lessons are taught early on. All of this stands in jeopardy when the symptoms of a childhood disease starts to develop. The joy that was being experienced gives way to panic and concern. Especially when you don’t know what you are dealing with.
That is what happens for a mom when the journey with Batten, or another rare disease, begins in a child. Sometimes, the road to a diagnosis is long and difficult as symptoms, like loss of vision, occur gradually over time. Other times, there are events like seizures that take place one after another, each and every day. Life is difficult and the concern for your child and the things experienced deepen your feelings. This helpless child is reaching out to you and it hurts to see things develop that are out of your control. Undying love and a bond that is impossible to break. That is what takes place as a result. Utter heartbreak is experienced as the diagnosis is found, but then, determination takes over even as the heartbreak remains. All of this, while mourning over what the future may hold. The experience changes a person. These kids have the power to change people. Even those who are not members of their family. For the parents, life becomes something that is much different than what they expected it to be like. Much of this was to be the case in Sara Bajlo’s life and experience.
A Girl’s Dreams
Sara Bajlo grew up in the country of Croatia. I have heard about the beauty of that country from others although I have not witnessed it first hand. It only takes a simple search on the internet to find out about the history of the country and to see examples of its beauty. It really is beautiful to behold and it is steeped in a rich history. The culture there testifies to this as does the architecture and surroundings. In her youth, Sara was ambitious. She had things that she wanted out of life and Sara had goals that included a family. First though, she wanted an education. She had grown up in the city of Split and then the capital city which is named Zagreb. Sara was attending college and had no idea concerning the challenges that lay ahead for her. Her goal was to complete her education and that she would do, but not without first going over a little bump in the road. Sara had been dating the man that would become her first husband. They had been dating since high school and it was on their second year of college that Sara became pregnant. She was going to have a baby! They were a young couple and they were both scared and excited about what the future held for them as parents. This was a lot of responsibility for people that were so young and yet, they were excited. Sara was going to be a mom and together, they would be a family.
Going to school while preparing to have a child was difficult but Sara was determined to keep going. She worked hard at completing all of her exams as her second year of college was coming to a close. The due date for her baby was September the 8th of 2009. This would be at the beginning of Sara’s Junior year, but she was determined to keep up with her studies. This, even as motherhood was on the horizon. Sara’s pregnancy would go well. The life within her would grow and remain healthy as things stayed right on schedule. This would change a little, however, as the baby’s due date arrived. It was one week after the baby’s due date that the doctors decided that Sara needed to be in the hospital where she could be watched. The physicians could tell that she had a big baby on the way, and they wanted her to be monitored closely. It was Thursday night, September the 17th, that doctors felt it was time to start inducing labor. This baby would not have an easy go of making an entrance into this world. Sara went through labor for twelve hours without dilating even a small amount. The doctors dealt with Sara’s situation by using medication several times to help speed up the delivery. For Sara, it was exhausting but so rewarding.
It was on September the 19th of 2009 that little Gabriela was born. Sara’s baby girl made her entrance into this world at 1:25 a.m. at Sisters of Charity hospital in Zagreb, Croatia. Little Gabi, as she soon would come to be known, had to work so hard to make her way into her mother’s arms. Sara recalls that her baby girl was purple in color, but that she was so perfect. Gabi was perfectly beautiful. She had all of her fingers and toes and she was covered in brand new baby skin. Sara could not take her eyes off of her baby girl as Gabi got used to her new surroundings. The bond that had begun as Sara carried Gabi for all of those months only intensified as she watched her baby’s every movement. She would tell me that she felt so much love at that time. It was a kind of love that she had never felt before. Sara was so happy and yet scared at the same time. She now had the new responsibility of being a mother to this child. A mother to this little human being that she felt so much love for. Sara would tell me that what she was feeling concerning this new responsibility was terrifying to her. Still, she was willing to accept whatever might come her way in order to spend her life with this precious child. Motherhood was a challenge that Sara would accept.
A Mother’s Pride and Joy
There were things that lay ahead that no one would expect to come Sara’s way. All she knew at this time in her life was that she loved this little person that was her very own. Sara would watch with much Joy and pride as Gabi grew and developed as any little girl would. She was such a beautiful little person, just as one would expect. Gabi would continue to grow and achieve her milestones in the normal way. She walked by age thirteen months, and she was walking all by herself, without falling. Gabi loved being out in the fresh air at the local park which was near her neighborhood. This was in fact, where she took her first steps. She would learn so much while being in this place which was her most favorite. Gabi would continue to grow up, spending a lot of time in this park with her mother by her side. She would make friendships with other little people her age. Innocent childhood fun and wonder is what was experienced. Everything was just as it should be for a little girl like Gabi. Sara was so proud of her little Girl. A new mom with her first child. A daughter, someone that she could relate to and help mold into a little lady. Gabi started to speak early. She was around ten months old when she first started to call Sara Mama. Her daddy she called Tata, which means dad in Croation. Gabi was fast at learning new skills and she was on the go as a toddler. Her speaking skills came quickly and Sara had no reason to doubt that Gabi would continue to excel in her development. Sara shared a little of what she was seeing with the following, “She was speaking in sentences right after her first birthday and I remember the first one. It was simply, ‘I am eating egg’. I would never ever have considered that something would go very wrong in the near future.” Sara would soon face one of the greatest challenges that can be known as a parent. At this time though, she had no idea what lay ahead for her and little Gabi.
Innocent childhood fun is always combined with learning, and it would soon be time for Gabi to start attending kindergarten. Sara had continued to attend school in order to attain her degree, and she was able to do this while being a mom. The first three years of Gabi’s life were a time in which Sara adjusted to her new role as a mother, and the bond between her and Gabi had become a very beautiful thing. A mom and her daughter. It was at three years of age that Gabi would start to attend kindergarten. This would be something that she looked forward to, but it would not come without there being complications. This was Sara’s first child and knowing what to expect didn’t always come easy. Some issues with little Gabi would come along, one of which was occasional crying spells. She also developed problems with sleeping and sometimes, Gabi would be up all night. Not knowing any different at that time, Sara was confident that this was just a normal phase of development. Her concerns however, would continue to grow. It was a stressful time for Sara. She and her first husband were going through a divorce and the situation required a move to a different apartment. This would all take place about six months after Gabi started to have issues with her mood and sleep patterns. Perhaps the stress of the situation was being transferred to Gabi as the symptoms were getting worse. Sara was very concerned about Gabi at this point and she decided that it would be a good idea to take her to a child psychotherapist. Perhaps the stress over these life changes were just too much Gabi. The outcome would be that Sara’s suspicions were confirmed. The therapist felt that the things taking place with Gabi were the result of emotional trauma related to her parents divorce.
There was, however, more going on with Gabi than was first thought. Much more, and things would begin to go terribly wrong! It was at four years of age that Sara noticed that Gabi was starting to stagnate in terms of her development. Here is some of what Sara was noticing. In her own words, “She was (at the beginning) ahead of her peers. Now, she was verbally around her peers, even a little slower then they were. Her fine motor skills were worse then they were in others her age. I was concerned but everyone else thought I was just exaggerating.” Moms seem to know their children like no one else. While we are all preoccupied with other things, moms watch and pay attention. Sara knew that all was not well. She would go on to say that Gabi was shutting down and forgetting things. For example, she would go to the bathroom and then forget where she needed to go after that. Gabi often seemed nervous and she was continuing to cry a lot. Things were not right with this sweet little girl and that would break any mother’s heart. It would be difficult to focus on the other aspects of one’s life with this type of thing going on. Her kindergarten teachers were worried as well. Gabi was becoming clumsy and she was falling for reasons that could not be explained. One episode in particular caused Sara to make an appointment to have Gabi seen by a pediatric neurologist. It happened that Gabi had fallen to the ground. She was shaking and had lost all control of herself. This was a huge scare for Sara and she needed answers.
Searching for Answers
It was at the first neurology appointment that much would be revealed. Gabi had been having myoclonic and absence seizures but they had been going unnoticed. This, because Sara saw epileptics as having grand mal seizures only. Perhaps that is what had happened during the episode seen at school. The EEG was telling. Gabi’s was a firestorm of activity, but the doctor would feel that she had simple epilepsy. So it was on April the 17th of 2014 that Gabi received that diagnosis. She was given medication to control the seizures, and the doctor comforted Sara by saying that this could all be over with by puberty. Nothing, however, could have been further from the truth. And still, Sara was able to leave the doctor that day with a feeling that the situation would be handled. After all, people can live with epilepsy. It was the case, however, that the frequency of Gabi’s seizures got worse. They became much worse, and the seizures were resistant to whatever drugs the doctor would prescribe. Sara knew that there was something very wrong. This young mom describes what she was seeing and the effect that it was having on her and her little princess, “That was the beginning of our horror story. Gabi started seizing what seemed like 500 times a day. They were all small seizures, like atonics, myoclonics, drop attacks, etc, but they were constant, and it was breaking my soul watching her suffer. She was falling, hitting her head. She was full of bruises, and I couldn't leave her alone for one second because she would get hurt.” Is there a way that any of us could imagine what it would be like to experience such a thing?
The doctors were changing Gabi’s medication constantly in hopes of controlling her seizures. This would be all to no avail. Some readers may find this to sound familiar, but for Sara, it all remained a mystery at this point in her life. She had to have answers, and she would remain hopeful that whatever was taking place with Gabi could be cured. The doctors continued to change and add medications but nothing brought the seizures under control. Sara was not the type to sit back and watch as moms usually are not. This was her baby and Sara wanted help for her. It was obvious that they were not dealing with simple epilepsy, but what was it? Doctors would start to head in the right direction, but would fall short of the answer. The results would be difficult, and the heartbreak would continue to intensify. Sara describes more of what she had to deal with as she shares the following, “It was so hard to get to the diagnosis because of restrictions in Croatian health insurance. She needed to go through all kinds of painful medical examinations. We were staying in hospitals for days but every medical report was fine and that was confusing us. Our doctor even considered Batten disease early on, but we tested her on type CLN 1 and CLN2 and her tests were found to be negative.” Gabi’s skin biopsies had been fine so Batten was excluded. Sara would not sit still and wait. She, in fact, would send Gabi’s medical reports to doctors all over the world in hopes of receiving the help that she needed. Again, there was nothing conclusive found, but there were many opinions given.
Sara shared through a post on social media the results of her search. This consisted of consulting with doctors both in Croatia and doctors that were from all over the world. In addition to those who thought of just epilepsy, one doctor thought that Gabi had something called Alpers syndrome and one a syndrome named Aicarda. One thought of something called Movement disorder and two thought that Gabi had Lennox-Gastaut. Four different doctors thought that little Gabi had Doose syndrome. This syndrome is characterized by seizures that are hard to control. This would make sense in part, but the fact was that Gabi was continuing to lose abilities. There were things happening to this dear child that were in addition to seizures. Were the seizures the only thing that was responsible for her decline? Sara described what she was going through, “I think that I was in contact with around forty different neuro-pediatricians, all around the world. I was going crazy, watching my girl losing everything, and not being able to help her. That feeling of helplessness was so terrifying. The only thing that kept me going was the idea that eventually, I would be able to help her. This all would be just ugly memories which we would talk about one day as she grew up healthy and safe.”
No Distance too Great
Eventually, Sara would take Gabi all the way to Children’s hospital in Bonn, Germany. There, for the first time, Sara heard that her daughter had a neuro-degenerative disease, but they couldn’t tell what it was that Gabi had. All throughout this time and throughout this search, feelings deepened. The bond between Sara and Gabi intensified. A daughter looking to her mom for help as her mom sought after an answer. Sara would tell me how hard it was for her. It was difficult to pretend that everything was going to be okay for Gabi when she knew that it would not be. And still, she didn’t have a firm answer. Knowing what she knew about Batten disease because of the earlier tests on Gabi, Sara didn’t feel like it was safe to exclude it. Sara had in fact, watched everything that she could find on the disease, when she had been waiting for the results of the testing. She was scared and she was onto something. Sara was seeing the symptoms of Batten, right before her eyes. This at least until it was excluded as a possibility. Gabi’s doctor would agree with Sara, but the fact was that the genetic testing that was required to exclude the disease was not done in Croatia. Sara needed to rule out Batten in order to look further, and the only way to do that was through this type of testing.
A mom in search of an answer. Sara was driven to get what she needed as she searched the internet for help. That help she would soon find and it would come from an expert in the field of research. Doctor Sara Mole is a professor of Molecular Cell Biology and she is also associated with the Great Ormond Street Hospital in London. She is an expert in the area of Neurodegenerative diseases. Dr. Mole was a key contributor in identifying and determining the characteristics of genes that cause Batten disease. Soon, Sara would have the answer that she sought after. That answer would bring with it a combination of emotions. Relief over knowing, and yet also complete despair and heartache. Sara emailed Dr. Mole, explaining everything that had happened, and the doctor answered. She requested that Sara have the materials needed to perform the necessary genetic testing sent to London. In response Sara sought out the help of a private lab where they performed bloodwork on Sara, Gabi, and Gabi’s father. The material was then shipped by FedEx to London. From that time on, it was just a matter of enduring the wait. I know that most parents would do anything in their power to help their children. Few, however, will have to endure what parents with a child that has a rare disease will face. Awareness for Batten disease has improved greatly since the time that I first started doing these stories. There is an increase of hope with the promise of new clinical trials that are on the horizon. However, in many places the road to finding the answers is still a long and difficult one to travel.
Sara is a very intelligent lady and she knew what was taking place with her Gabi, even before the results of the testing had returned. She knew instinctively that her daughter had Batten Disease. Sara just didn’t know what kind it was. Sweet Gabi had digressed as her condition worsened. It was in November of 2015 that this precious girl lost her vision. By March of 2016, she could no longer walk. She was only six and a half years old at that time. The utter heartbreak that Sara must have felt for her daughter. What was Gabi feeling inside? It was at this point that Sara knew that what she hoped to be able to exclude would actually be confirmed. Sara had learned through her research that there had been a clinical trial taking place in the United States for children that had the CLN6 variant of Batten disease. This involved Gene Replacement Therapy and she hoped that would be the variant that Gabi was fighting. Sara would have packed her bags and traveled anywhere in the world to save her daughter but this was not to be. Sara would tell me that she was sitting and drinking coffee while on vacation in the city of Zadar. This was when she received an email. It was in the month of July in 2016 during the summer holidays, and it was Dr. Mole that had contacted her. The news was devastating even if it was somewhat expected. Gabi, in fact, was diagnosed as having the CLN7 variant of Batten disease. Sara’s worst fears were confirmed. Knowing and yet hoping that her instincts were incorrect. Here is what Sara said about what she felt as she opened the email, “It broke my heart into a million pieces. I knew that every little bit of hope that I had just died. This happened the moment that I opened the email.”
The Process of Realization
Sara had, up until this point, been busy trying to find the answer for what was plaguing her daughter. She really hadn’t taken the time to process her own feelings. There was only time to think about what her next step was for getting the diagnosis. She was only focused on helping Gabi until the time that the truth was determined. Things changed from the moment that she read that email. All of a sudden, she mourned over what the future held. She knew right then that her life would never be the same. This was her Gabi. Her beautiful first born daughter. This was the hardest set of circumstances that Sara would ever face. It was difficult to think about once her mind was free to consider what the future held. It is still difficult. Sara had remarried prior to Gabi being diagnosed and she had given birth to Gabi’s little brother who they named Vigo. The little guy is now four and a half years old. She would later give birth to a little girl who they named Mara. She is now two years old. Mara was a gift to Sara after Gabi’s diagnosis. I am certain that as it is with any parent of a child with special needs, it is difficult to manage a family while caring for such a one as Gabi. Again, when it comes to something like Batten, the challenges can be so much greater. Gabi is precious and she is so worth every bit of extra energy that it takes to care for her.
I am constantly thinking up new catch phrases and differents ways to express my feelings when it comes to kids that battle Batten disease. Please make no mistake, the feelings are genuine. Attached to my blog is a set of phrases that I use to stir the thinking of people that read these stories. Here is a part of it in quote, “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.” When you think about what a child’s life is supposed to be like, and you compare it to what these children go through, it should stir your emotions. I have stated what a child’s life should be like on several occasions. It should be filled with innocent and carefree fun as life’s lessons are learned. Batten and other rare diseases take much of that away. At least it tries to, but these kids remain so resilient through most of the struggle and that is why, to me, they are the most amazing. In a post on social media, Sara talks about the resilient nature that Gabi has displayed as she has battled Batten. Those of us who follow these kids have seen this type of thing over and over.
Sara explained that Gabi would go through the changes associated with Batten disease without complaining about what was taking place. It would break any person's heart to see a child losing their vision. This, knowing that seeing the sights and wonders that brought joy to that child were no longer available. I am always amazed at the resilient nature of these children. They make me think about all of the small things that I may complain about on any given day. How would I deal with things if I lost my vision. The loss of Gabi’s eyesight came and went without her complaining. She simply would ask her mom for sunglasses when they were needed to shield her eyes. Everything that would take place with Gabi would be handled by a level of maturity that amazed Sara. Caring for her during these times would only cause the bond between this mother and warrior daughter to increase exponentially. Gabi played and laughed through it all and she is much loved by all who know her. Sara refers to Gabi as a “magical little girl”. That is so easy to see even from such a great distance as this. Gabi is one of the most amazing children, and this has been testified to by all who know her!
Moving for Hope
CLN7 is one of the more rare forms of Batten disease, and it is pretty aggressive in nature. There is not a form of treatment for it at this time, you can only manage the symptoms. Sarah would have done anything in her power to help Gabi. She would have traveled anywhere. There were so many people that cared about Gabi where they lived in Croatia. This included the professionals that did their best to help her medically. Sara though, felt that it would be helpful to move to Germany because the medical system was better equipped to handle Gabi’s situation. There was more knowledge concerning Batten disease in Germany. And so it was during May of 2017 that Gabi and her family left what was familiar for that which was felt to be beneficial. Germany was to be their home until they returned to Croatia the following December. It was while the family was in Germany that this writer had connected with Sara while on-line. I had come to find out that she had been reading the stories written about other little Batten warriors. I had no idea that we would meet one day at the 2019 Batten conference in Denver Colorado, and I was glad that we did. I was happy to know that reading the blog that contains these stories was beneficial to Sara. All this time, sweet Gabi has battled Batten disease and she has done so, so sweetly and with such tender dignity. If these kids do not melt your heart, you either don’t have one or perhaps, you are not paying close enough attention. Please pay attention!
Everyone that has been involved with this blog knows that the questions that I ask can be difficult to answer. I ask them because I want people to know what it is like to be under these kinds of circumstances. I want to know for myself. Empathy, after all, includes being able to understand other people’s feelings and emotions. I know that these feelings run very deep when it comes to these children. You need information in order to write and so I ask. I know that this is not easy. Sharing about what Sara is feeling about this experience was the hardest part for her. Who couldn’t understand that? If you read what Sara had to say, and you care, you can’t help but to be touched by her words. Here is the first part of what she said to me, “It’s so hard for me to speak about what I am feeling about everything that happened. Mostly, I am trying to suppress everything just to function normally but some days are harder than others. I have even learned how to speak about it without any emotion included. This, because if I let myself feel it, I would be overwhelmed. I couldn't be functional for her and my other two children.”
It is dreadful to think about the way in which this disease impacts the lives of children and also those who love them. You could put in its place a number of rare diseases that affect children and the impact would be the same. Batten disease takes away pieces of the child a little at a time. It cannot take everything though. Not the bond that exists between the child and those who love them. It cannot take the memories which remain so vivid in one’s mind. It cannot take away the place that these kids hold within a person’s heart. It just cannot! All of this is more than true when we are speaking about a mother and her child, a mother and her daughter. Sara has had to adjust to the new life that she has as a Batten mom. She said that she had to say goodbye to the old Gabi and she needed to say hello to the Gabi with Batten disease. That was so hard for her because she needed to learn how to move forward as she continued to care for her daughter. And still, the memories are impossible to ignore. Sara puts it like this, “There have been times that I didn’t know who I was without her. I still remember all of the sweet kisses she gave me. I remember all of the times that I heard the word “Mama”. I remember all of the hugs, her voice, her look. I remember her before this disease. There are still painful memories when I had hoped that there would be happy memories one day.” Batten moms are so strong and they are that way for good reason. There is much love and respect from the members of this household for all of you.
The Bond and Being Changed
It is so easy to see the love that Sara has for Gabi’s little brother and sister. There is a lot of hugs and kisses from these two. There is fun and laughter in the house as daily life is lived by these two children. Vigo and Mara now play at the park that has been so adored by their big sister. They are both seeing and experiencing the same things that were experienced by Gabi while she played in the very same places that they now play. Both of these children are experiencing life as it should be by little people. Innocent fun is the order of the day as life’s lessons are learned. Together, as a family, they all love this warrior princess that has fought with such tender dignity. (Continue to battle Gabi. You are so beautiful and you will forever be that!) The entire experience has changed Sara in a big way. How could it not? It was difficult for Sara to talk about how the experience has changed her but she did so with the following, “Everything that happened to Gabi changed me in a way that I couldn’t even imagine. It has made me to have a different view on life in general. I now see what really matters in life, what are the things that are most important, and how to really live your life. It has taught me how to deal with my emotions and how to survive. It made me grow and it made me strong. I would never, ever have thought that I would have survived something like this.”
Sara tries to live each day in the present, while not thinking too far ahead into the future. She does this while making life as normal as possible, and she cherishes everyday that she has with Gabi. I think that this is what is felt by anyone that cares for one of these special ones. I can’t say it enough, kids that battle Batten are some of the most special. The feelings that they produce in people are so strong. The knowledge of their plight, in combination with the love that is felt, produces feelings that are so powerful. For the families, it can be painful. The undying love that they require produces the strongest of bonds. That type of bond can never be broken, nor would you want it to be. The love that is felt is one that is difficult to put into words that are adequate. Sara says as much with this, “My relationship with Gabi is hard to explain in words. I was so young when I gave birth to her and she is part of my identity. I planned on growing old with her. She exists in every part of me. I really couldn’t imagine my life without her and yet I must.” Anything that Sara has been unable to describe in words, she has been able to show us through her actions. Her depth of love for Gabi is clearly seen by the love that she has displayed. I thought of the following in response to what Sara has stated as she expects to one day have to say goodbye. There is no way that I could find words that are adequate,
The love that exists between Gabi and yourself is something that is beautiful to behold. Life is not what you would have expected it to be. There are challenges that you have faced and challenges that will continue. They are things that have not been experienced by many and that will always be part of what makes you special. Gabi will always be a part of who you are as a person, and others will benefit from the things that she has taught you. Things about life, how to love deeply, and how to care for others more fully. After all, Gabi has taught you about the things that are important. Perhaps one day not visible, she will always be present in different ways. Most importantly, she will always live in your heart and that will continue for all of time. The bond between Gabi and yourself is one that could never be broken. You wouldn’t want it to be. She is yours, always and forever. Some angels exist here on earth before they go to heaven. Sincerely,
In closing, I had written earlier about those catch phrases that I create and use on occasion in regards to these special warriors. I would like to do something similar here as I conclude Gabi’s story (her story will never really end):
Gabi is beautiful and there has never been a time that she was not. She's a princess and a warrior that has battled. She is beautiful now and for all of time. Sweet Gabi is every bit like those who have inspired me to write. This, concerning kids who battle Batten disease, “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!” You can’t help but to let it happen when we are talking about one such as Gabi.
~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!
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:
Journey Unexpected - The Rich Family
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the pieces and will yourself to do your very best. A love that is profound and a bond that is stronger than any other is formed. Two little beauties in one family is two, too many but you seek to make a difference! A journey unexpected...
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
*Journey Unexpected - The Rich Family
*My Life, My Everything - Lydia Rose
*A Love That Hurts - Shashka's 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