Christina Bouraimi will join us on Childhood Cancer Talk Radio (CCTalkRadio) on April 6 2017.
Author: “Gregster60.com” Link to blog:
FACE TO FACE: A FAIRY TALE
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.
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.
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.
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.”
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 remember when my son Benjamin 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.
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.
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.
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.
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.”
I was reading a comment about my last blog entry by a Facebook friend named Shannon. She stated that “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.” My reply was “… that’s 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.
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!