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Ten-year-old Mikey Ash, left, and his mom Nicole share a light-hearted moment together at their home in Exeter.

Nicole Ash of Exeter talk about her son Mikey’s autism and the occupational and physical therapy he has undergone.

Ten-year-old Mikey Ash bounces in his living room at this house in Exeter.

EXETER — As Mikey Ash sat at his kitchen table to drink his juice and munch on a peanut butter and jelly sandwich, he would be doing what normal kids can do at the age of 10.

Mikey can feed himself now, but learning how was not an easy task.

The 10-year-old Exeter native currently lives with Rubinstein-Taybi syndrome, or RTS, a form of autism.

RTS is a genetic disease that involves broad thumbs and toes, short stature, distinctive facial features and varying degrees of intellectual disability.

Mikey’s mother Nicole Ash, 41, said it was years after he was born before doctors could diagnose Mikey’s condition, and it all started when he was born seven weeks premature.

“He was mommy and daddy’s Christmas surprise,” said Nicole with a laugh. “He spent some time dealing with typical preemie things such as breathing problems, feeding problems and all those issues that go along with being born early. We came home and two weeks later he started with some more severe medical issues, so we were sent to Hershey and on that admission they found problems in every system of his body.”

Nicole said doctors in Hershey discovered kidney, heart and brain problems that led to Mikey suffering some seisures. She said he also had stomach issues which led to problems with feeding.

Over the years, a lot of tests for certain diseases came back negative, giving doctors a difficult time pin-pointing exactly what was wrong with Mikey.

“For the first four years of life we just went with ‘Mikey syndrome’ …,” said Nicole. “Every time they would test for something specific it would come back negative. At age four he wasn’t really walking and talking, so they gave us an autism diagnosis. That helped get us services, but they knew there was still an underlying medical condition and finally at the age of six, with recent updates in medicine they were able to diagnose him with Rubinstein-Taybi syndrome.”

According to Nicole, only one out of 500,000 kids are born with RTS.

Other setbacks that Mikey suffers from with RTS are speech, language and developmental delays, meaning he does not play like other children his age should.

Mikey and his family have been told the worst, said Nicole, such as that he would never walk, talk or breathe on his own. However, Mikey and his family refused to go down without a fight.

“We didn’t accept that,” said Nicole. “We had therapists coming to the home when he was under three and then when he turned three he went to preschool at the Wyoming Valley Children’s Association. They were fabulous; they got him moving around, trying different (things).”

Eventually, Mikey would begin sessions at Heinz Rehabilitation Hospital of Allied Services in Wilkes-Barre. Nicole said the doctors there would not rest until Mikey received the treatment he needed.

He receives thearpy in speech from Dr. Sue Balint, occupational therapy from Dr. Mary Beth Spellman and physical therapy from Dr. Jean Fredmund.

Today, Mikey attends Tenth Street Elementary in Wyoming and can walk on his own, feed himself and, according to Nicole, has a vocabulary of over 1,000 words.

“If I list everything he’s overcome you’d be able to fill up the entire newspaper,” joked Nicole. “He really, truly is a miracle. He’s had numerous surgeries, numerous hospital admissions and at one point we spent more time in the hospital than we did at home. That’s very sad to me; that’s not what a childhood should be.”

There are still struggles, Nicole says, but those are just more goals to achieve.

“A backpack with just a folder in it pushed him backwards and he would fall,” said Nicole. “It’s one of our goals to go up the stairs holding onto something.”

Mikey also participates in activities such as Challengers Little League baseball and goes on trips and events sponsored by the Allied Services Parents & Professionals.

Parents & Professionals is an informal network of families and clinicians collaborating to create fun opportunities for individuals with autism and their families. They’ve sponsored bus trips to different zoos, bowling events and will hold a golf classic at Huntsville Golf Club in Lehman Township, and the proceeds will benefit pediatric patients with autism at Allied Services.

Nicole and Mikey feel right at home with the supportive group.

“It’s wonderful,” said Nicole. “It gives you a time to be stress free. If your child is loud, or hand clapping or crying, nobody is judging. It’s a nonjudgmental group which is a big thing. It makes the whole family be accepted.”