NORWALK, Conn. – It is difficult enough having a child diagnosed with a terminal and debilitating illness, but life for Jacqueline McGuirk was made harder when her family became homeless.
Her son, Noah, 6, was diagnosed with Sanfilippo, or MPS III, at age 2. Sanfilippo is a genetic disease that is characterized by a delay of mental development and cognitive regression, with mild physical problems.
McGuirk said she often has to hold Noah in a full body lock to keep him from hurting himself and her.
“He’s much stronger than me,” she said.
“I’ve had Social Services called on me,” McGuirk said, because of the way she has to hold him.
McGuirk, a mother of four, moved to Norwalk last year after fighting a custody battle for one of her daughters. But then she lost her home.
Norwalk political figures Mary and Mike Geake, of the city's Democratic Party in the South Norwalk District, heard about McGuirk’s problems and wanted to help. McGuirk and her family moved into the Geakes' Norwalk home temporarily. Initially, McGuirk was going to move into a shelter, but one look sent her right back to the Geakes.
“She went to the shelter and there was a drug deal on the corner and a drunk guy in the hall,” said Mary Geake.
Right now, she said, she needs a safety bed, which will keep Noah from wandering in the middle of the night, something he is prone to do. He also needs a wheelchair. McGuirk has prescriptions for these items, but that the state insurance is fighting it, she said.
After about two months, Mary and Mike Geake contacted Rep. Bruce Morris, D-Norwalk, to get Noah enrolled in school. “He misses school constantly, I don’t even like him being at school,” McGuirk said.
For now, though, McGuirk has to work with the system and take care of her son who, developmentally, will never advance past where he is now, and whose body will deteriorate over the next few years.