Theodore’s Miracle: the Fight against Batten Disease

January 5, 2019

NEW YORK – How easy is it to endure when you learn that your child suffers from an incurable illness? How easy is it to fight with all your powers against all the ominous predictions to keep him alive? How easy is it to believe in a miracle?

Christina and Christos Doumas believed in the “miracle” and intended to live their life with Theodore, their son who was diagnosed at age six with the fatal Batten disease.

Theodore Doumas was born in 1995 and until his sixth year, showed no sign of illness. However, a routine ophthalmological examination revealed a problem with his vision.

A series of time-consuming and painful examinations in Europe and America followed in order for doctors to come to the conclusion that Theodore suffers from Batten’s disease, which can affect one in 12,500 people.

This rare neurological disease is fatal and its first symptoms occur in childhood. Loss of vision, convulsions, trembling, psychoses, motor problems, speech and swallowing problems are some of the terrible symptoms of this illness. Death comes soon. Depending on the form of the disease and how early the onset, those afflicted often do not live longer than their teens.

Theodore is already beating the odds at age 23 and struggles along with his parents to defeat Batten’s disease. His health, as of today, reflecting the severity of his illness and his age, is much better than his doctors expected.

He has lost his light but the other serious symptoms of his illness have been significantly reduced. His mobility is quite satisfactory for a youth who has Batten at this age and fortunately remains active, always with a companion.

As for epileptic seizures, he had few in the past and a few months ago but fortunately with intensive care and treatment he no longer has them at this time. He can also swallow and breathe effortlessly, very important for avoiding infections and maintaining activities, both personal and social.

He has problems with articulation but his mental level and emotional status, his morale, allow him not only to socialize but also to seek social contact.

He goes out, loves going to the stadium, watching his favorite team play. He likes to attend classes at the university and he enjoys the theater.

Theodore stands up against his illness with vigor and high spirits. He does not complain, he has no bitterness, and speaks little about his illness. At his side, his family, stands by him through it all.

For example, when he first lost his vision, his brother taught him to play video games, replacing his brother’s eyes by telling him what is happening on the screen.

Again, when Theodore’s articulation worsens, especially when stressed, Christina puts on songs and they all sing together. When he is afraid that his balance is not good and is in danger of falling, then they put on music and dance.

The attitude of Christina and Christos, the parents, is indeed admirable. They were not defeated, they fought with courage and dignity for their child, despite the bleak prospects, despite the great financial burden that was exacerbated by the economic crisis.

“My deep faith in God has made me believe in myself and transmit this faith to my child,” said Christina. “The birth of Theodore as the birth of every child is a miracle, especially for the mother. When the first time we learned the severity of the disease, the floor fell out from under us. But we turned our hands into wings to fly to the light. We decided with my husband to follow Leonidas’ example and fight a battle that we all considered to be lost, it would be inconceivable for us not to fight tirelessly until the end. There has never been a second thought.”

Christina has devoted her life to her child. Twenty-four hours a day, she works with him, to keep his health stable. At the same time, she has created the website Theodore’s Miracle: theodoresmiracle.org.

“Our webpage aims to raise awareness both for Batten disease and for our Theodore. It provides information and has brought together important people, such as actors, athletes, academics, and scientists, to raise awareness. A typical example is the videos of Aesop’s Fables which they recorded for the website,” she said.

All these years, Theodore and his family are fighting an impressive battle. “We win each day separately,” said Christina. “We live as best we can at any moment and we do not prejudge anything about the future. Of course, there are very often very difficult times. The road is not paved with rose petals. You will get hurt, you will stumble, but it is important that you never give up. Despair has no place here. Optimism and hope are the lights that illuminate the rough road. What taught me all this way and is always in my heart in every difficult but joyful moment is the line from the Lord’s Prayer (the Our Father) “Thy will be done.”

Theodore Doumas and his family will soon come to the United States for gene therapy that is expected to be the salvation for young people like Theodore. Clinical trials for another type of Batten have already begun and clinical trials for Theodore will soon begin in 2019.

They have put their hopes for Theodore’s salvation in America. The financial cost is great and the family continues the financial struggle to raise the required amount of money. We wish them wholeheartedly to emerge from their nightmare soon to defeat the monster called Batten’s disease.

You can find more information about Theodore Doumas online: theodoresmiracle.org and on Facebook: facebook.com/theodoresmiracle.

There is also a Youtube channel (https://bit.ly/2IC4s3O) where you can see Aesop’s fables recited by actors, athletes, and scientists raising awareness of Batten disease.


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