Family shares story of son with rare Angelman Syndrome

Health

MONROE, Conn. (WTNH) — Governor Malloy has declared Saturday, April 25 as “Angelman Syndrome Awareness Day” in Connecticut. Angelman Syndrome is a rare neuro-genetic disorder that affects one in every 15,000 live births. Those who suffer from the disorder have developmental delays, lack of speech, walking and balance disorders, and they often suffer from seizures.

The Moretti family of Monroe knows about the syndrome all too well. Their three-year-old son, Joey, was diagnosed with it when he was just 19-months old. Tai Moretti says she and her husband knew something was wrong when Joey was only five-months old.

“He was missing milestones such as sitting up and rolling,” said Moretti. “He couldn’t latch on to a bottle.”

It took the family 14 months to learn that their first born had Angelman Syndrome.

“We were on a family vacation,” she said. “I received a phone call from our neurologist at the time and our world fell apart.”

Joey is in Pre-K at Monroe Elementary School. He also has in-home physical, occupational, and speech therapy five days a week by the staff at Creative Solutions. Joey is able to stand with assistance and has been making progress with his mental development; however, his mother says her son will most likely never talk because of his genotype.

“We’ve learned to kind of push all of those things that we thought were going to be for us, those typical things, and now we have celebrations,” said the mother. “All of his milestones are celebrations.”

Family and friends have rallied behind the Moretti family and started the Fighting Angels Foundation.

“Those closest to Tai and Joe, including us, really want to do everything we can for Joey,” said Frank Lieto, President of the Fighting Angels Foundation.

The goal of the foundation is to raise awareness and funding for the disorder, and educate people about a syndrome many people know little about. The family is hoping their story will be a source of comfort to other families going through the same thing, but also allow them to move forward in hopes of one day finding a cure.

“It gives me more hope, more hope that he can be better even two years, five years down the road,” said Moretti. “It’s just hope and believing that anything is possible.”

The Fighting Angels Foundation is hosting their second annual “Raise Your Wings” event on Saturday at 7 p.m. at Testo’s Ristorante in Bridgeport. For more information on Angelman Syndrome or Joey’s story, click here.

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