News Summary

NEW CARLISLE, Ohio — L. Robyn Foster knew that something was unusual about her son Zan shortly after he was born.

"He never seemed to grow very much. He had feeding issues and was choking a lot. The worst of all was that he never slept," said Foster.

Foster's doctor dismissed her concerns about Zan, who is now 14. She was being "overprotective" they told her.

"I 'fired' him," said Foster of her general practitioner.

When her son was 3 years old he was diagnosed with autism by a psychiatrist, she said.

But Zan did not exhibit the classic signs of autism— he was affectionate, enjoyed interaction and maintained eye contact, something autistic children do not generally do, said Foster.

As Zan grew he began throwing lengthy temper tantrums, often lasting hours, and he rarely slept, said Foster.

He faltered in his education forcing Foster to change his school five times in seven years.

"I felt two feet tall in a crowd of giants," said Foster of her difficulties.

The pieces of the puzzle began to fall into place when Foster's mother, Vickie Dutton, met Charlie and Tina McGrevy at an autism-support group in Springfield and began comparing notes, she said.

Dutton noticed similar characteristics between Zan and the McGrevy's son Garrett, 8, said Foster.

A genetic test was done on her son. Zan had Smith-Magenis syndrome, the same diagnosis as Garrett, she said.

There are three confirmed cases of Smith-Magenis syndrome in Clark County, a rare genetic disorder caused by a deletion in the 17th pair of chromosomes that affects one in 25,000 people, according to Parents and Researchers Interested in SMS.

SMS is an autism-spectrum disorder, which is a grouping of psychological and development conditions that includes Asperger syndrome and autism, according to PRISMS.

Parents of children with rare autism-spectrum disorders sometimes have trouble getting a correct diagnosis and support.

Foster's meeting with the McGrevys changed everything for her and Zan, she said.

"The support we have now, even having one other person with the syndrome, has taken a lot of stress off of our family," said Foster. "I'm not the same person I was."

When she found out the news over the telephone she started crying, she said.

Zan entered the room and asked her what was wrong, said Foster.

She tried to explain and he asked innocently, "I have Miss Magenis Problems?"

She laughed through her tears and hugged him.

The McGrevys also played an instrumental role in finding Clark County's third case of SMS.

They founded the PRISMS 5K Marathon and Family Carnival that raises money in the county for the national non-profit group.

It was there that Kimberly and Chris Norman took their daughter Bailey, 14, after reading a story in the News-Sun that had a short description of SMS characteristics.

"I just knew in my heart that this was it," said Kimberly Norman. "That was an amazing couple of days."

The family had experienced the same difficulties as Foster in getting Bailey correctly diagnosed, she said. And like with Zan, doctors also told the Normans that their daughter was autistic.

"It didn't make sense. Everything just didn't fit exactly," said Norman of the mismatch between her daughter and the tell-tale signs of autism.

When Bailey was finally diagnosed with SMS it was a "tremendous" relief to Norman because finally all of her daughter's symptoms fit a diagnosis.

"It was as if we had finally found a long lost family," said Norman. "Just to know we found people with the same experience as us."