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!
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:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
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
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