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Patient Narrative: The Simmons Family

When the Simmons family first starting noticing something wasn’t quite right developmentally they brought their son to a specialist. The first specialist told them that he would simply ‘snap’ out of it and that there was nothing to worry about. The second specialist… said the same thing.

Dr. Catherine Nowak was different.

Michael and Hilari Simmons were referred to The Feingold Center for Children through Drew’s daycare provider, whose son was a patient of Dr. Murray Feingold. When they stepped into the center, Drew was seen by Dr. Nowak.

“Some doctors go into it for the money…and some for the patients,” said Hilari. “And she definitely went into it for the patients.”

It was then, when Drew was only 18 months old, that she diagnosed him with Monosomy 18P. A word that is foreign to most people, but to the Simmons family, Monosomy 18P is regularly used in their vocabulary. Drew has Monosomy 18p with a 18;14 translocation; which means he has speech impediments, he is going to be petite, will continue to have low muscle tone and growth delays.

Drew was the youngest case of Monosomy 18P that Dr. Nowak has ever seen or diagnosed. Usually, children with this disorder are diagnosed around the age of 4-years old, but because he was diagnosed at such a young age, his prognosis is much better than other people with his disorder.

Drew is one of a kind. His mother calls him their little ‘social butterfly’. He loves talking to just about anyone and everyone. Recently, the Simmons family was chosen as our patient family to attend and to be honored at the John Havlicek Celebrity Fishing Tournament in Maratha’s Vineyard. There, Drew interacted with several children and teens that showed endless patience with him.

“The problem that Drew faces is that it takes him a lot of time to say things and get words out and other kids don’t have the patience to wait for him,” Hilari said. “They get bored, annoyed and end up just walking away,” she said. “But the Havlicek kids didn’t act this way towards Drew,” she said.

Hilari said that as a mother to a child with any type of intellectual disability, the hardest thing is to have patience, but that it is also the most important.

Today, Drew is just starting up summer camp. During the school year, he is mainstreamed into the public school system and has a one-on-one aide that helps him with simple things; like tying his shoes, zipping his coat and opening snacks. But they don’t know what the future holds. Drew is 9-years-old, but developmentally he is 7. They have dreams of him going off to college and leading a normal life, and the Simmons family credits his success and the bright hopes for his future to The Feingold Center.