A promising research study offers hope to families of children with a rare syndrome, but it is going to be expensive

Amy, Wyatt, Max and Jason Moore lead a happy life, despite its struggles, but they hope a cure for Wyatt’s rare and debilitating syndrome is in sight. Photo by Danny Fulgencio

When Amy and Jason Moore left the hospital with their son, Wyatt, everything was, according to medical professionals, normal. But as Wyatt’s parents anticipated the usual baby milestones — rolling over, sitting up, walking — which never happened, they knew something was wrong, Jason says.

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Doctors ran a battery of tests, which came back normal. Genetic screenings and more screenings turned up nothing, until the last one, which revealed that Wyatt had MECP2 Duplication Syndrome, a rare, crippling neurological disorder that occurs almost exclusively in boys.

The syndrome is so rare that it wasn’t until 2005 that doctors had a test for it. The Moores, who also have a 7-year-old named Max, were at first “sad, then shocked and then puzzled,” Jason says. Hypotonia (low muscle tone), developmental delay, mental retardation, limited or absent speech, spasticity, involuntary movements of hands, teeth grinding, recurrent respiratory infections and epilepsy are some of the symptoms MECP2 patients endure. But today, dealing with Wyatt’s condition is routine.

“We are not bummed out every day. We do what we need to do and Wyatt is Wyatt,” he says.

With help from his family, Wyatt, 4, gets around on a specially made bike. Photo by Danny Fulgencio

The blue-eyed child can’t smile, he has never spoken and he has lost the ability to walk, but he does have a special bike that he rides with the help of his mom and dad. He likes to swing and be outdoors; they can read his moods.

“He swings his arms when he is happy, and he lets us know when he needs something,” Jason says.

Despite the rarity of the syndrome, the Moores discovered a second Lake Highlands boy who has MECP2.

“Wyatt’s physical therapist told us about a family near us who has a 20-year-old with the same symptoms as Wyatt,” Jason says.

Amy went to visit them, he says, and when they learned there was another boy in the neighborhood with MECP2, they couldn’t believe it.

The two families are supportive of one another, Jason says, and families from around the country, in fact, comfort each other through a website, Facebook and conferences at which they have met in person.

And now, they have hope that things could improve for Wyatt and others with MECP2. A renowned neurological disease specialist in Houston, Dr. Huda Zoghbi, will head a project to study and hopefully reverse the symptoms of MECP2. Parents of the 200 children diagnosed with MECP2 are joining to raise the $80,000 needed to launch the experiment. The entire project will cost $236,000 over three years. In order to start the study by spring 2012, the 200 families have set a goal of raising $401 each, by April 1. They call it the 401 Project.

Jason is optimistic about the proposed experiment and says he’s not sure it will directly help Wyatt, because experiments like this take time, but he is hopeful that it will, and that it will also help other boys.

Amy is imploring the help of the community in raising the needed funds to kick off the project. Learn more about an upcoming fundraiser for Wyatt on p. 15, and anyone can donate any amount online at 401Project.com.

“If anyone can help in any way, we would greatly appreciate it,” she says. “My sweet boy deserves the best. This syndrome is not fair to him. I want his words. I want his steps. At the least, more answers, more ways to quiet the seizures, more hope.”

Donate to 401Project via the Moore family at 401project.com.for-wyatt