![]() 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. ~Christina Bouraimi~ 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! ~Greg~ https://www.gofundme.com/theodoresmiracle
49 Comments
Kelly Hessler
3/25/2017 01:10:22 pm
Beautiful
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Linda Hoehn
5/15/2017 03:16:11 pm
This is truly a sorry, then enlightening & in the end a beautiful story. My prayers go out for a total cure for this rare & debilitating disease. God bless him & I truly believe having friends w/special needs parents, they were chosen by God to go to these wonderful loving families.
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Retta Evans
5/5/2018 02:12:25 pm
Another beautiful touching story Greg. I don't always comment on these blogs because most of the time tears are flowing and everyone knows where my heart is as far as the Batten monster. I pray you don't ever stop blogging as this brings continuous Awareness to those unaware and that's one more person to help push for finding a cure for these Precious Children. My heart is with all of these kids and their families. Prayers to you all
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Dawn
3/25/2017 04:59:25 pm
Beautiful, thank you for your blog and letting us "get to know our batten families better."
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Greg Lopez
3/25/2017 05:52:00 pm
You're very welcome Dawn. Thank you for your kind words!!
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Hunterdunham
9/14/2017 01:39:37 pm
I have pws need help lost weight don't want have pws my name is hunter Dunham
Sandy
3/25/2017 05:58:46 pm
Wow I am truly speechless. Thank you so much Greg. You are doing such an excellent job of spreading awareness about this hideous disease that robs families of their most precious gift in life their children.
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Lisette
5/14/2017 09:26:34 am
Wow. I hope there will be an answer. Take each day as special
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Earline
3/25/2017 06:01:35 pm
Thank you for writing about this family. I never would have known about them otherwise. Strong loving family. Their struggle comes out in your writing.
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Greg Lopez
3/25/2017 06:03:01 pm
You're very welcome. Earline. Thanks for your kind words!
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Retta
3/25/2017 11:06:20 pm
Very touching story and beautiful familues.
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Greg Lopez
3/25/2017 11:11:12 pm
Thank you Retta! I think so too.
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Lisa Sicora
3/26/2017 04:01:16 am
Beautiful story, Greg. Shows that this insidious disease knows no geographical boundaries.
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Greg Lopez
3/26/2017 07:39:36 am
So true Lisa. Thank you so much!
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Will Stevens
3/26/2017 05:23:26 pm
Awesome Story Greg!!!!
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Greg Lopez
3/26/2017 05:27:48 pm
Thanks so much Will! Much appreciated.
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Sherri Long
3/27/2017 09:21:41 am
This is a beautiful story.
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Greg Lopez
3/27/2017 10:01:08 am
Thank you Sherri!! I agree!
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Deborah Hamilton
3/27/2017 10:28:32 am
Beautifully done Greg!
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Greg Lopez
3/27/2017 12:02:36 pm
Thanks so much Deborah!!
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Sarah Flud
3/27/2017 03:52:44 pm
Wow. Very touching. Brought tears to my eyes.
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Greg Lopez
3/27/2017 04:38:59 pm
Thank you Sarah. Glad that you liked it!
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Trish Dennis
3/28/2017 01:17:35 pm
Such a wonderful story. God bless you and your gorgeous family my dear sweet friend.
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Greg Lopez
3/28/2017 01:18:59 pm
Wonderdul family is correct!
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Greg Lopez
3/29/2017 08:42:58 am
Thanks for your Kind remarks and yes, I will take a look!
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Amir Akhter
3/29/2017 11:29:02 am
Excellent !!!
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Greg Lopez
3/29/2017 12:01:31 pm
Thank you so much!!
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Lynn Denny
3/29/2017 01:03:17 pm
What a tremendous family you are my heart goes out to you all xxxxx
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4/2/2017 04:36:54 pm
A truly heroic article and family! I wrote my story in a book and self published, something you may want to do. Maybe just maybe you could raise funds from this project to help fund the cause. Good luck
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Greg Lopez
4/2/2017 04:44:28 pm
Thank you so much Alesia!!
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Alicia
4/6/2017 06:55:46 pm
Thank you for helping in the quest to share the truth of the batten community & all we face. I'm another batten parent with my daughter the same age as Theodore - breaking the mould & living way beyond expectations. We thought for many years she was actually leading the world in the slowest progression of the disease, but now I'm not sure. Everyone has a unique story to be told. The rabbit hole is endless
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Greg Lopez
4/6/2017 07:06:00 pm
Alicia thank you for your very kind words. I wish you and your daughter the very best. My goal is to help spread awareness while honoring all of you who are part of a very caring community. Please take care and thank you again!
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MARIE RASCO
4/11/2017 12:36:00 pm
I AM SO SORRY FOR ALL THAT HAVE HESE KIND OF DESEASES GREG YOU ARE A BLESSING TO ME I DONT KNOW HOW WE MEAT BUT I THANK GOD EVERY DAY WE DID I LOVE THE STORY I PRAY FOR THE ONE THAT WILL ONE DAY SAY THERE IS A CURE
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Greg Lopez
4/11/2017 08:31:38 pm
Thank you so much for your kind and thoughtful words Marie. So appreciated!!
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Thank you so much for your moving story. I am a Grandmother of our Grandson , who is battling Batten Disease.
4/12/2017 03:12:10 pm
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sue sivulka
4/17/2017 12:23:36 pm
Such a touching and moving story. Thanks for sharing. Our daughter, Linda died from this nasty disease 10 years ago this May. She was 42 years years old. I know well what Christina and her family go through. My thoughts and prayers are with her family and all families taking care of a loved one with Battens
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JOAN AVERY
4/21/2017 12:50:03 pm
thank you for being part of the team that works to find cures for rare diseases. Our granddaughter has Battens but I have become aware of the many many other rare diseases that are our there robbing our beautiful children and grandchildren of not just life itself but of all the wonderful times in life. We strive every day to make our granddaughters life one that is one of life, love and the committment to do whatever it takes to make her life memorable
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Lynda Arnold
5/23/2017 10:32:23 am
What a beautiful story of love for family. Thanks for sharing!
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Claire Choquette
6/14/2017 08:11:19 am
A very touching story! I've known about Battens for a few years now & I hate it more now than ever! You are a very strong family & so loving too! My prayers are for you & your son! God bless you all!
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Laura
7/23/2017 11:52:12 am
Beautifully written. I'm so sorry for the path you, as a family have to go through.
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Jay Hamburger
9/9/2017 12:52:23 am
What a tragedy......and a triumph of your enduring spirits!
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9/18/2017 11:38:10 am
Christina's son may be blind, but I feel ha clearly sees that he is blessed with a loving & supportive family. God bless them all!
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Bethany
11/16/2017 02:36:41 pm
Thank you for sharing this with me
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ANA FIDALGO
12/14/2017 01:39:43 pm
MUCHA FUERZA DESDE MALLORCA OS DESEO LO MEJOR Y QUE OS LLEGUE UNA CURA , SIEMPRE SIN PERDER LA ESPERANZA
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Patricia
12/22/2017 10:13:47 am
What a wonderful and beautiful story about such an evil disease, Batten Disease.
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Josie Carrilo
6/22/2018 09:38:54 am
Thank you so much for sharing,I’m in awe of this familyPrayers and love
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Leave a Reply. |
Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “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.” That is what happened to me! Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so. ~Greg Lopez~ Blogger and Advocate HOW THIS BLOG WORKS - Take the titles listed below and go to month and year listed in the archives below (way below). Batten Family
Titles - January 2017 -
*The Story Between The Lines February 2017 - *My Kind Of Royalty - CLN2 March 2017 - *The Caring Type - CLN2 *Face to face: A Fairy-tale -CLN3 April 2017 - *No Ordinary Love - CLN2 *A Rare Friendship May 2017 - *Tyrell and The Rare Love Story -CLN2 June 2017 - *Seth and The Healing - CLN2 July 2017 - *Little John and The Reason - CLN2 *Sands and The Scottish Princess - CLN3 August 2017 - *A Rare Kind of Devotion -CLN2 *The Giggle Box - CLN2 September 2017 - *Austin Smiles *Sweet Montanna and the Status - CLN3 October 2017 - *The Blog about my Blog *Sebastian's Story - CLN8 November 2017 - *Kayden And The Change In Plans - CLN3 December 2017 - *Those That Are Like Them January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2 *Brock and The Priceless Memories - CLN8 February 2018- *Jamesy Boy and The Treatment - CLN2 March 2018- *The Priceless Princess From Beyond - CLN2 June 2018- *That Kind of Love - Conner's Story - CLN2 August 2018- *Lasting Impressions September 2018- *What I See (She is a Butterfly) - CLN1 October 2018- *No Longer Alone - Kristiina's Story - CLN2 November 2018- *Things We've Talked About - Oscar's Story - CLN7 *The Reason Why - Hannah's Story - CLN3 December 2018- *Kayla's Perfect Princess - Breanna's Story - CLN2 February 2019-
*Warriors Unaware - Mia and Kaleb - CLN2 April 2019- *Her Little Story - CLN1 May 2019- *Someone Like Raelynn *Forever Royal - The Final Version - CLN2 August 2019- *Awfully Beautiful - The Life of Noah and Laine - CLN2 September 2019- *A Lifetime of Love - Tegen's Destiny CLN1 December 2019- *Forever Beautiful - Gabi's Story - CLN7 January 2020-
*The Miracle Baby - Amelia's Story - CLN1 March 2020- *Dylan's Life - A Small Town Story - CLN2 May 2020- *Princess Grace and the Challenges - CLN2 June 2020- *Anything for Tessa - Her Story - CLN2 September 2020- *Haley Bug's Battle - A Family Story - CLN1 November 2020- *Journey Unexpected - The Rich Family - CLN2 January 2021-
*My Life, My Everything - Lydia Rose - CLN2 February 2021- *A Love That Hurts - Shashka's Story - CLN2 July 2021- *The Things Looked Forward to - Addy’s Story - CLN3 November 2021- *Love Complicated - Bailey Rae's Story - CLN3 April 2022- *So Many Questions - Evelyn's Story - CLN2 January 2023-
*The Feelings They Produce - Violet's Story - CLN2 February 2023- *Because of Love - Frankie's Story - CLN2 April 2023- *The Need to Breathe - Scarlett's Story - CLN2 MPS Family
Titles - July 2020-
*The Beautiful Light of Haidyn Grace - MPS3 August 2020- *Any Distance Traveled - Reagan's Story - MPS3 September 2020- *The Missing Someone - Kiernan's Story - MPS3 March 2021-
*The Transformation - Victoria's Story - MPS3 April 2021- *Not by Accident - The Charlie Grace Story - MPS1 June 2023-
*The Difference They Make - Harvy's Story - MPS6 September 2023- *Love Profound - Veda Rae's Story - MPS3 Archives -
July 2024
Highlights from the beginning. When the blog was named 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 Letter to Larry - February 2017 |