Xayia’s Story

It’s likely you never heard of Rett Syndrome, but every 90 minutes a girl is born who suffers from the neurological disorder. A girl suffering from this severe form of Autism will live a long life, but it’s like she’s trapped in her own body, unable to communicate or control body movements.

Xayia Moorehead is very much a happy three-year-old. She likes music and watching "Blues Clues", but from early on her grandmother Lori knew something was wrong.

"Everybody kept saying it’s just from being a preemie, she’s delayed and I’m thinking there’s something else going on we got to figure out what’s going on," says Lori Moorehead.

Lori took Xayia to multiple doctors and finally Zanesville pediatrician Dr. Maggie Somple diagnosed her with Rett Syndrome. Dr. Somple says the disease is not subtle and children will lose skills they once had.

"If they’re walking they usually lose the ability to walk. If they’re talking they usually lose the ability to speak words," she says.

That was one of the hardest parts for the Moorehead family.

"It’s like going through the stages of grief when someone dies, because it’s like they’re losing everything," says Lori. "She has progressively went down hill. She’s lost all of her grasping coordination. She has lost most of her speech. She used to call me ‘Meme’ and now she just says me."

Due to the syndrome Xayia also suffers from seizures, digestive disorders and problems growing.

Dr. Somple says children that have Retts will constantly be ringing their hands. That’s one of the ways the syndrome is usually diagnosed.

"That’s why they’re so thin too because they lose, because they burn so many calories because they’re moving 24/ 7," says Lori.

Xayia takes swimming classes, physical, speech and occupational therapy. There is hope on the horizon, researchers have located the gene mutation that causes Retts.

"Our hope of hopes is that they will figure out exactly what gene is affected and be able to prevent this in the future," says Dr. Somple.

The Mooreheads are hopeful the research will also lead to a reversial in Xayia’s condition.

"I would love for her to be able to walk. I don’t think i’ll ever give that up, but if she doesn’t that’s okay. I want her to experience everything like all other girls do," says Lori.

Print Plus in Cambridge is selling "Team Xayia" t-shirts for $10 with proceeds going toward Rett Syndrome research. You can also donate to help with her medical costs at People’s Bank in Cambridge.

If you would like more information about Rett’s you can contact the Mooreheads at XayiasMeme@live.com.