Face to face: A Fairy-tale
Awestruck! As the saying goes, a picture is worth a thousand words. But it is also true that some pictures leave you speechless. Both thoughts, I believe, are true when it comes to this picture. It both left me speechless but at the same time caused me to ponder a question. What kind of love must exist between Christina and her son Theodore? This picture showing them face to face tells a story without a word even being spoken. I immediately was inspired to tell their story after seeing this picture. There is no way that I could adequately tell it in full with one article. I will, however, do my best with Christina's help to provide a glimpse of what they have been through as a family. This story takes place in Athens Greece. Athens is home to ancient culture and history. It is less than four hours away from Olympia, which is where the ancient Olympics took place. Athens would later become the first sight of the modern games in 1896 and would later host the games again in 2004.
Among the sights in Athens, visitors will survey the ruins of an ancient civilization. As such, it is the center of what makes up much of ancient Greek mythology. It's ancient roads are also included in the journeys of the Biblical Apostle, Saint Paul. Fast forwarding to more current times, Athens is home to Christina Bouraimi and her husband Christos Ntoumas (Greek law doesn't permit a woman to take her husbands last name). They have been happily married for 27 years and are the proud parents of two sons, Vasilis and Theodoros. Christina tells me that Christos is a wonderful father and husband. Altogether, she is thankful to God for her beloved family. Life has it's challenges for the family as the economy in Greece is in disrepair and turmoil. This requires Christina to work outside the home to help Christos maintain the family's finances. Both of their salaries are less than desirable even though they are intelligent and hard working individuals.
Like all families, their life together is a story in the making. However, unlike the average family in Greece, Christos and Christina's family has had an additional and very rare challenge. Their circumstances revolve around their youngest son Theodoros, or Theodore. Theodore was born May 10, 1995. He entered this world in full health with no apparent issues. The furthest thing from his parents minds was that they would have to deal with a disease for which there is no cure and which usually leaves no hope for those who have it. The only thing that Christos and Christina visualized for their son Theodore was a healthy and productive life. As Theodore continued to develop his parents had no reason to believe anything other than that he would he would achieve everything that he set out to do. A lot of what they had anticipated for Theodore and their family slipped away as things began to go horribly wrong with their young son's health. It doesn't matter what the culture is that you live in. As parents, we have expectations for our child's development into a normal lifestyle. But with a rare child that is all interrupted as the disease begins to invade a person's health and circumstances.
At the age of six Theodore started to lose his eyesight and after six months he was completely blind. What this all must have been like as Theodore's parents searched for answers. What was it like to see their child go blind and not know what it is that was happening to him? It was soon after that when Theodore began to face what often times is associated with the beginning of a rare disease. He began having seizures. This of course is terrifying to any parent. Christina put it in these words, “His body was trembling like a fish out of the water, while in my arms. In these arms that held him for the first time and I felt that I was embracing the most precious diamond of the world.”
Her words make me think about the extra attention that a child requires when health issues arise. I think about all the emotions that develop as a result of the concerns that we face when something goes wrong. How we can feel helpless as a result of not being able to fix everything right away. Maybe things can never be fixed and that leaves us feeling totally despondent. The inseparable bond that I have talked about in the past begins to develop as the child becomes increasingly dependent on a parent or grandparent for the constant care that is needed. Their search for answers would begin and it would soon bring them to the realization that Theodore had a rare metabolic disease with a very bad prognosis. He in fact had Juvenile Batten Disease, Cln3. In the search for a diagnosis and treatment they would travel all over Europe. This would include places like Germany, the UK, and Finland to name three. You see there was very little knowledge about Batten Disease in their homeland. Christina stated that: “...in Greece there are facilities for neurological treatment but doctors are unfamiliar with Batten.”
Because of their love for their son, they would exhaust whatever resources were necessary to find the answers that were needed.
Christina stated that Theodore's diagnosis came from top scientists in three different places. The first was Massachusetts General hospital where one of Theodore's blood specimens was examined. The second was the Great Osmon street Hospital for Children in the UK, and the third was Universitatsklinikum Hamburg in Germany. Since that time, they have battled Batten Disease with any means they can. They have traveled all over Europe in their efforts to find hope in the form of a cure. Apparently their efforts have paid off for Theodore to a large degree. Christina has stated that he has not had any seizures since 2004.
I have son named Benjamin who has special needs. I remember when he was young. There was a scramble to figure out what his needs were. Similar to a rare child (but not drawing the comparison), he did not meet all his milestones and he was quite sick a lot of the time. He had seizures that were not yet under control. My wife was left with juggling all her responsibilities at home while dealing with constant appointments and phone calls. When she needed my help, I tried to be there. The bond between me and Benjamin has grown over the years and he is the center of our world. I love being face to face with him as he is such a teddy bear (Sometimes a grumpy teddy bear). We have always been aware of the fact that his condition is hereditary and that it was something that he would most likely be able to live with.
For Christina and her family, their situation was not clear. What was it like for them? The love that they exhibited and the distances that they would travel to get results. The sacrifices that were made in seeking out a diagnoses. That is incredible. That is a face to face kind of love!
As I continue to blog about these wonderful families and their brave and adorable children my methods of gathering material continues to develop. Really though, if it wasn't for the parents and their families, I wouldn't be able to do a adequate job. When I first contacted Christina about information needed, she was more than happy to provide me with whatever I asked for. The first thing that she sent me was in the form of a story. The story is about them and I thought that it would be appropriate to include it in it's entirety. Christina, you and me are going to be a team on this one dear friend!
A Life Like a Fairy-Tale
Have fairy tales any purpose in the life of every human being? Over time I realized that they do. Some people are the protagonists (leading character) and some the readers! Unfortunately, in my case, I happen to be the protagonist. My story is a rare one because the hero, my youngest son Theodore, is rare. This fairy-tale has dragons and evil witches, good fairies, and brave knights. It also has fear, hope, wishes and prayers. The heroes have a horrible time with the evil Dragon, Batten. The only thing he scatters in his path is pain, terror and death in little angels around the world. Although they are battling bravely in the end they lose their lives and the dragon loses his own too! No one is victorious, everyone vanquished! Why all this? At the age of five my little son Theodore faced with this monster which extinguished the sun from his eyes and made him frightened. Darkness and fear everywhere. Then, another strike!!!!! Epilepsy! His body was trembling like a fish out of the water, while in my arms. In these arms that held him for the first time and I felt that I was embracing the most precious diamond of the world. This furious witch appears and disappeared without a warning. Chaos, loneliness, terror, and endless winter.......
War or Peace? Doctors, doctors, only doctors. There are no weapons for this warfare on entire earth. Travels in Europe. Nothing. Just despair and pessimism. Sorrow, depression, and disappointment. Too many drugs. Poison in his body. This body, gifted from nature with the most beautiful presents. This voracious monster steals them one by one. I hated it and that was against me, I could not destroy it. It is being a long time since it came. I had reached the point, beautiful for me was the less ugly. Many years passed until the day my good fairy Love, called her other two sisters Hope and Faith. These three of them drove away terror and despair. We also have our three loyal Knights Theodore, your father, your brother Vasilis and our beloved friend and sibling Nikos. We are all eager to give our lives for you Theodore. Life has taught me that miracles need faithful servants of God to be. And we are in loyal service for you. It is already a miracle you are 22 years old.
Never, I have never complained why my child is affected and others’ are not. The only thing I ever asked from God is to protect all the little angels around the world are fighting this beast and other similar ones. Both of Theodore’s parents, we are slaves of this situation. To meet all the needs of our child we are obligated to work many hours per day with very low salaries due to economic crisis here in Greece. That is weakening our fight and threatens to deprive our child a life with dignity. Last few months Ι created with shyness a Facebook account. In there I have become friends with many people around the world. It is a great honor for me, these mothers, fathers, brothers, sisters, grandparents and relatives accepted my friend request. I admire all of them because they are all braves, fighters, strong and they love their children with all the strength of their soul. I feel that Theodore found his siblings and all together we are going to write the end of our fairy tale. The most beautiful one. A CURE.
Advocate and Theodore's mother
Theodore is another incredible warrior. There are far too many that have to fight this battle but it is a privilege to know about these stories of courage. Christina explained the characters in her fairy-tale to me. I can be a little dense sometimes you know. So I asked. She told me that she was a little hesitant to start a Facebook account but did so for good reason. There just were not any people that she knew locally that were facing the same set of circumstances. After all, they are facing something as a family that is rare. Concerning the people that she has met on Facebook she has stated that they were some kind of a miracle for their morale. “They are our good fairies and their warriors (children) are the brave knights.” I can testify to this just by my own observations. The people that make up the Batten Disease community are some of the most kind and loving people that I have ever encountered.
What a tremendous resource the connections that one makes on Facebook can be when facing something like this. I just laugh or shrug my shoulders when someone tells me something like “I don't do Facebook”. Last but certainly not least, she also explained that within this group of heroic characters are a small group of doctors and nurses. They have been there for Theodore and his family and have given them their very best efforts. Rounding up the family's cast of heroic characters is their beloved friend Nikos. He really is like family to them.She also explained that the dragons and the evil witches are the difficulties they have met and still are facing on their journey. “To be more specific I am speaking about the lack of resources such as the little knowledge of our disease here in Greece and financial and social problems that are getting even worse with the humanitarian crisis in our land and unfortunately the racism from persons in high positions in state and social structures.”
As a family they still have a battle on their hands which they fight bravely. It's not only that they are fighting the disease but they are doing so in an environment that can be a hindrance to their success. To look at the amount of effort and sacrifice that they have put forth in getting their son the very best help is so inspiring to me. How about you? As I look at all families that face this same battle I see a combination of heartbreak and determined love. I was reading a comment about my last blog entry by a Facebook friend named Shannon. She stated the following and her words are something that I use frequently, “It's so hard to see our children go through these battle's but all we can do is just show our undying love for them.”
I replied to Shannon's comment with the following, “That is what makes these stories so beautiful. The undying love that this extreme hardship produces.”
Yes, by example, you parents of these rare kids have demonstrated to me an undying face to face kind of love. There are so many stories out there that are worth telling.
Theodore fights on with the help of his devoted family. Christina states that Theodore is on a low-fat diet. He receives Valproic Acid and high doses of Co-enzyme Q10 plus Vitamin E. He meets with trainers that specialize in children with special needs. He also takes English and general education lessons, as well as, attends courses at the Agricultural University of Athens. All of these are being covered financially by his parents exclusively. This family is not backing down!
“When Theodoros was diagnosed, and as we were informed what to expect for our future, love of course never faded away. However, we were shaken by despair and we started to lose faith in something good for years to come. But our love for Theodoros gave us the power to stand as Spartans, fighting bravely till the end. The years came one by one and thank God things didn’t come as expected. Theodoros taught us what it is to be warrior and stand up within furious battles.” I think that this can often be said of any child that is fighting a rare disease. These kids fight each day to forge ahead. They really demonstrate the human spirit and show us how determined they are. In the process they end up teaching us so much about courage and strength. Christina and Theodore, thank you for showing me what a Face to Face kind of love is like. I wish all of you the very best!
My dear friend Christina is a person of great integrity. When faced with the challenges that were brought on by Theodore’s diagnosis of Batten Disease, she made a decision. That decision involved not only being the best mother that she possibly can be and to fight the disease. It also involved being an advocate for a cure to Battens. This she has done perhaps better than any and she has been so unselfish and very driven to help. She has never asked for any financial help for Theodore’s medical needs but the expenses for his care are increasing. This is a very special family. Perhaps you might consider helping by clicking on the link for Theodore’s gofundme account. These people are very deserving. Thanks for your consideration!
The Caring Type
The entire experience began for Sandra Garrett in this way...
“...his page popped up in my news feed and I instantly fell in love with him. His beautiful blue eyes and porcelain like skin was just pure perfection. I followed CASEN'S CRUSADE daily from then on as this precious little one brought such joy to my life and I truly adored him.”
After a few months, it became very apparent to Sandra that she had a strong desire to meet Casen and his family in person. She would find a way to make it happen. As she continued to follow Casen on his page, her relationship with Pam Cameron, Casen's grandmother, began to flourish. As a result, she sought the opportunity to ask if she could meet them in person.
“I knew in my heart of hearts that he was very real and I wanted to meet him and touch him and just see him for real.”
Sandra recounted her reaction to meeting Casen as we spoke while Skyping. She talked about how it was for her to travel the distance and to see Casen for the first time in person. How the family was so appreciative of her coming the distance to meet Casen. But what did it mean to her? To see him in person after viewing so many of his pictures while reading all the details of his daily life with Batten Disease. She talked about how it was love at first sight after stumbling upon Casen's page.
There is nothing like the experience. It is wonderful to follow these kids long distance and it seems like each person has one that they fall in love with in a special way. For Sandra, and many others, that little person was Casen. At the top of Casen's journey, he had nearly seventy thousand people that followed his page.
I have said it before but there is power in human touch. To actually be there in the same room and be present with a rare child that you follow brings it to a whole different level. This is something that Sandra and I have in common as we have both experienced it. For Sandra, being able to place her hands on Casen and to tell him in person how much she loves him was a life changing experience. She puts it like this:
“Lying next to him on his bed on my 50th birthday was the most precious moments of my life. To run my fingers through his beautiful hair and to stroke his porcelain like skin and kiss him and tell him how very brave he was is something that stays with me forever.”
Those of us who follow children that have rare and fatal diseases are drawn into these stories in a similar fashion. It often times changes our perspective and focus in life. I know that it has in my case. How does Casen's story begin?
This particular story really begins like this: In the great state of Texas no less!
Casen Michael Cameron was born January 15th, 2007. He was born a normal, healthy child and he looked so perfect in every way. He had all his fingers and toes, plus he was delivered to the showroom floor complete with that new baby smell!
His parents, Corey and Chandra, looked at him with great expectation for what his future would bring. But they were not the only ones that were excited about receiving little Casen into the world and into the family. Papa Willie and Granny Pam were ready to love on their new little grandson and to give him everything that grandparents have to offer. Papa Willie, especially, had thoughts of the time that they would spend together in the great outdoors.
Casen's parents were busy people. They both worked hard to keep the household they had established going. This gave Pamela a good opportunity to spend time with Casen and he quickly became the center of her attention. She stated it like this:
“After Casen was born, me living within a few blocks of my son, I asked to watch Casen while they both worked. My son was a Smith County Sheriff Deputy, Casen's Mom Chandra, worked for Lowes. They were both gone many hours between them. I am always home, nothing to do, so taking care of Casen before his diagnosis was really nice, we got to spend lots of time together. Played in the yard, went to the lake. Casen had a riding tractor he loved, would ride all over the place, was the best toy we ever bought. He also had a battery operated 4- wheeler, omg, was so much fun to watch him ride.”
And so the old adage that says you are suppose to “spoil them and send them home to their parents” didn't apply to Casen. He spent a lot of time with Willie and Pamela. This created an inseparable bond between them in addition to that which existed with his parents. Casen was a very busy and happy little guy. Everything was good in his little part of the Lone Star State. That was until November 2009, just shy of Casen's third birthday. That is when he had his first seizure. He was rushed to the hospital but the doctors were unable to find any problems. He was released and sent home with orders to see a pediatrician.
And then on Christmas Day of 2009. That is when Casen would have a total of three seizures. He would have one at home and then one at the hospital. The third one took place as he was being released. The ER doctor would recommend that Casen be taken to Children's Hospital in Dallas to consult with a pediatric neurologist.
Can you imagine what this must have been like. To have this happen on Christmas Day. The anxiety that it would cause in his family.
Future testing would include EEG's, CAT scan's, MRI's, and blood withdrawals. Casen was placed on seizure medicine. When the seizure medicine didn't work, it was changed.
Without the family knowing what was happening, Casen began to exhibit all the signs of having a rare and fatal disease that they probably didn't know existed.
While visiting the hospital, it was determined by a social worker that he was not progressing like a normal child with his speech. He was not reaching milestones of development as expected. Casen was enrolled in Elementary School where Casen's teachers worked with him through the rest of the school year. Some improvement was seen and it provided some hope, however, towards the end of the school year, Casen quit walking on his own. The doctor thought it was the combination of medicine he was taking. Casen's speech began to lessen. He went from using three word sentences, to just using one word.
A second neurologist was consulted and she ordered a muscle biopsy of Casen's thigh upon learning that he had quit walking. The results were forwarded to Casen's primary neurologist and the entire family was asked to meet with the doctor. On June 21st, 2011 they were informed that the cause of Casen's seizures had been found. The doctor informed them that Casen had Late Infantile Batten Disease.
When I read stories like this, a recurring question always comes to mind. The question is, what is it like to be told by a doctor that your child or grandchild has a terminal disease? That the disease is rare and there is no hope? What was it like for Corey and Chandra to learn the news? Pamela and Willie had to be just devastated. In fact, they were:
“Just before his third birthday, he started having seizures. Then came the diagnosis, Batten Disease. Our world fell apart. Casen was always such a happy lil guy, always a smile on his face. Loved to ride and be outside. We had a very close bond, and he absolutely loved his papa. I spoiled him so bad, but loved every minute of doing so. After being diagnosed, I continued to watch him, I didn't want anyone else to look after him, didn't think we'd find anyone to look after him as well as we could. I went to every doctors appointment, read everything I could find about Batten Disease.”
The family started Casen's Facebook page and began to do fundraising to help insure that he had everything that he needed. Together they began the same journey that far too many families take. Batten Disease really isn't that rare.
Pamela was not a nurse by vocation but you might have thought so by the way she cared for Casen while in her home. She said that her cabinet looked like a drugstore. My understanding is that this is common in households where a child with Batten Disease is cared for. Although intimidating at times, each parent does whatever is necessary to help their child stay in the fight and to battle on. In this case it was Casen's Granny Pam! I just know that she did an incredible job.
I've talked about it before. The strength of the bond that is created between two people when you care for someone that has special needs is unparalleled. When that child has a rare and incurable disease the bond increases almost exponentially because of the constant attention and the heartache that the situation creates. Pamela absolutely adored Casen.
“Casen was the love of our life, we were so devastated at the diagnosis, we'd have given anything in the world to have been able to change the disease. Spending weeks at the hospital each time he was admitted, was hard to watch. Never really knew if we were going to make it through this or not, but he was a fighter. Knowing each day was a gift. My heart broke, being a granny, I couldn't fix this for him. I'd have given anything.”
Unfortunately, Corey and Chandra's relationship suffered the same fate that many do and so they separated. You know what? Life happens! Because of this Casen's mother moved away. This left Willie and Pam with only having Casen every other weekend, extended time during holidays, and in the summer.
“My heart hurt he wasn't right here by our side at times, but what ever it took, I was always there.”
Towards the end of Casen's life, Pamela told the kids they had to make plans for the end. Again, she took the helm as she wanted them to be at peace knowing everything was in place for Casen. Although I am just getting to know Pamela, I know what type of person she is. She is the Caring Type. This heartbroken granny always did what was necessary for the well being of Casen and her entire family.
Pamela recounted the families final days with Casen in this way:
“I just knew how bad this was going to be on all of us. We had spent a week or so in the hospital, they told us to call family together, he wouldn't make it through the night, even the doctor spent the night, and our lil guy made it. The next morning, they said they felt like taking him home is what he was waiting for. So we did, and he made it for a couple more days.“
“The final day, he was having so many seizures, they kept him on phenobarbital, and comfortable. I think everyone we knew came by to say their goodbyes, all family were there, we told Casen it was okay to go with Jesus. We all understood, we knew he was so tired of fighting and needed peace. He closed his eyes and took the Lords hand and went. Nothing in the world could have prepared us for that moment. My world was swept away.”
Casen lost his battle with Batten Disease on April 23,2014.
Each child that that faces Batten Disease will gain their wings. My desire, along with many others, is that this changes sooner than later. The teal colored angel wings that each child receives symbolizes freedom. These wings symbolize freedom from a body that no longer functions as it should. Freedom to fly away to an eternity without pain or suffering.
Pamela would face the additional challenge in the passing of her husband Willie in January of this year. My understanding is that Willie had been ill for a while and his leaving was somewhat expected. That doesn't lessen the pain of losing the person you have spent your adult life with. Pam has told me that she receives comfort from the fact that Willie and Casen have been reunited. Casen loved Papa Willie.
She is very active in the Batten Disease community. Pam maintains Casen's page for spreading awareness and creates the wings and ribbons for each child that passes. She also does fundraising which goes directly to Batten families that are in need.
I have no doubt that she relives the experience of dealing with Casen's disease and his loss with every new child that she follows. (I don't think that the pain ever goes completely away.) You see, she's a granny to every child and young adult who has Batten Disease. She is amazing and she is there for them!
As for Sandra Garrett, she traveled more than half way around the world to meet her little Batten Warrior, Casen. This is a testament to a couple of things. For one thing, it testifies to the transforming effect that following a rare child can have on a person. It also testifies to the kind of person that Sandy is. She put it like this:
“Meeting Casen did lead me to follow other Batten Babies as I felt that traveling to the other side of the world was not going to be something that I did in vain. I then needed to support and love all the precious children and families that are afflicted by this hideous disease so I made it my mission to ensure that this happened.”
And so, it has happened. These kids are her passion. Sandra is my friend and fellow advocate. Not only that, but we consider her to be part of our family. However, it's only because Pamela is willing to share her with us. I am so happy to know that both Pam and Sandy are my friends. This community is full of amazing people and both of these ladies are no exception. You see, they are the Caring Type. Chances are that you are as well!
To the parents of these rare children, I have to say that you have no idea what you and your kids mean to us. Then again, maybe you do!
My heart breaks. This is my passion and my purpose...
He's from the great state of Texas but don't look for him there. He's out spreading awareness to all who would care. I know that you care!
Just type in Casen's Crusade into your browser on Facebook to view Casen's page!