A million gift certificates: Finding donors for children with special needs

Sometimes a seemingly trivial moment can transform into a life-altering one. Medical researcher Anouk Dulieu, who works at the Louis- de- Béloire hospital in Arles, France, experienced the powerful effect of just one kiss…

A million gift certificates: Finding donors for children with special needs

Sometimes a seemingly trivial moment can transform into a life-altering one. Medical researcher Anouk Dulieu, who works at the Louis- de- Béloire hospital in Arles, France, experienced the powerful effect of just one kiss when her daughter, Sophie, first developed MS in 2004.

Dulieu and her husband split the cost of nursing Sophie, then 13, around two and a half times the average cost for a teenager with MS, which costs more than $300,000 to treat. Sophie also misses school and sports, something typically not a burden for teenagers. But for Sophie, it’s a constant battle.

“We put up the most difficult roadblocks for her so that she has an OK time in everyday life,” Dulieu said. “We arrange her meals, tell her to wait a little bit longer in certain places and to be dressed in a nice way. Sometimes, Sophie kisses me hello after she kisses me goodbye and it’s nice. But one single kiss can change a whole sequence.”

Sophie began suffering seizures, nearly falling over the night she was 6 years old. By age 10, she had lost the ability to walk and speak. At age 14, she was wheelchair-bound. Her son, at that point 4, began wanting to go back to school, but the family had no resources to help him. Sophie also had to stay home all the time because her own muscles were too weak to lift her arms to reach the handles of her bike. She was 8 when they found a bone marrow transplant could help her. While treating other family members, an online conversation led Sophie’s doctor to discover that the family of eight’s type of bone marrow matched someone in the European gene pool and that further testing was in order. On January 11, 2005, Sophie and Dulieu received the genetic news.

“When we found out, it was terrible,” Dulieu said. “We knew something was wrong, but we didn’t really realize. Sophie had no warning. We weren’t feeling sick. We hadn’t noticed anything at all. It was just the word ‘MS.’ It was a shock.”

Though there are many causes for MS, the key to eliminating the disease is to immunize a patient against a common, brain-damaging mutation, a process known as interleukin-6. “We do a blood test and an antibody test, and if we see it above normal levels we vaccinate against it. It’s no big deal,” Dulieu said. “It’s against the virus but it’s no big surprise.”

Today, Sophie is an active girl. She plays basketball, ice hockey and soccer. She has a passion for video games and likes drawing. Sometimes, like any good teenager, she wants her parents to indulge her just a little bit, and this one gesture just may do it.

“It’s something that lets me know that what you do is good because it makes you happy,” Dulieu said. “When Sophie asks me for something, I tell her I’ll try and find some.”

It’s the same kindness with which Tulane University neuroscientist Anjali Patel helped save her infant daughter Aislin’s life two years ago. She heard the baby crumple and had to watch as doctors frantically tried to revive her. Patel offered a hug that came with a key piece of information: in three to five years, Aislin’s brain stem would begin to shutdown. But since her bone marrow was healthy, she could at least repair herself if a donor were found. Patel’s mother had just died of leukemia, and she thought there was no way Patel could donate bone marrow. But Patel and her husband urged their way in.

The doctors found the best match and Patel’s mother became Aislin’s donor. AISLIN did well after treatment and has already started to play. She’s even learning to swim and riding her bike. And now that Anjali is a mother, she can’t help but think of a child she saved more than four years ago.

“The friendship has continued since she was a baby,” Patel said. “For my parents, it’s like a dream — that when she was one month old and I offered to donate marrow, they would accept it. It’s an act of faith and it was like talking to a god.”

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