2012: Amy, Wyatt, Max and Jason Moore 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.
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 unusual that it wasn’t until 2005 that doctors had a test for it. The Moores, who also have a son 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.
That’s what we wrote about Wyatt Moore and the Moore family in spring 2012.
Today Wyatt is 9 years old and Max is 11.
Amy Moore is still working hard to secure support and treatment for her son and others dealing with the same or similar syndromes.
Event: Nov. 15, all day, at Neighbor’s Casual Kitchen
Moore is holding a fundraiser in the neighborhood Tuesday, Nov. 15 at Neighbor’s Casual Kitchen, 9661 Audelia.
From 11 a.m. until 9 p.m., the restaurant will contribute 20 percent of sales to a nonprofit called the 401 Project, 401project.com, a parent run organization aiming to find a treatment for MECP2 Duplication Syndrome.
The day includes live music, raffles for one-of-a-kind items and packages, live music and special recognition of donors.
Flier announcing fundraiser: Save the date, Nov. 15
In addition to rallying participants and donors to the cause, the organizers also are seeking auction items to raise money for the project.
Auction request
According to Moore, research has shown great potential to reverse symptoms of Wyatt’s syndrome; with proper funding, clinical trials in patients could begin.
