In response to a story that appeared in the June 20 edition of the Bayonne Community News, residents of Bayonne are pooling resources in an effort to help a family cope with their daughter’s crimpling disease.
After 17 years of caring for their daughter, Gabrielle, Joe and Gerri Squillante of Bayonne are seeking a way to make improvements to their home that will allow them to bring their daughter in and out and to provide a way to bathe her.
Since birth, Gabrielle has suffered from a rare neuro-genetic disordered named Angelman Syndrome, or more frequently know as “the happy puppet syndrome.”
Gabrielle doesn’t walk or talk. She can’t dress or feed herself, and still wears diapers. Although about to turn 17, she is still at a developmental age of less than two.
Three years ago, the family took out a second mortgage to make changes to the two-family home to better accommodate Gabrielle and her sisters. This included the construction of a deck outside their kitchen with the intention of eventually constructing an elevator. The deck got built, but the elevator was too expensive – as were the needed changes to the bathroom that would allow the parents to more easily bathe their daughter.
Currently, 49-year-old Joe must carry Gabrielle up and down the stairs from the house and lift her in and out of the bath.
“Our hope is to be able to modify our bathroom with a walk-in-shower stall so that Gabrielle can be bathed effectively and safely in a bath chair,” Gerri said.
Because the family income exceeds the amount that would allow them access to most government programs, the Squillante’s have been forced to fend for themselves.
But the article has drawn attention to their plight, drawing a response from residents throughout Bayonne and possible help from several local business people.
William Archiello, owner of Archie’s Cab Co., said he could not sit by and watch the family struggle. He has spoken to the president of Bayonne Community Bank and started a bank account in the family’s name. “I started the account with a few thousand dollars with the hopes that other people will donate to the fund until there’s enough to get the family what they need,” Archiello said. “This is the family’s account and in the family’s name. People who want to donate to the fund can go into any branch of the Bayonne Community Bank and add to the account.”
Canisters will also be located at Victoria’s TV on Broadway near 18th Street, Team Mobile cellular telephone store on Broadway and 24th Street, or Archie’s Cab Company on Kennedy Boulevard and 24th Street.
Archiello also hoped that local organizations might get involved, as well as local contractors who might donate services to the effort.
“I think it’s terrible that a middle class family can’t find help in a situation like this, when a mother and father dedicate their whole life to a child and nobody else is willing to step up to the plate,” said Archiello, who at 16 was for a time paralyzed from the neck down.
In an additional offer, Anthony Icognito, owner of Top Star Promoters, has proposed doing a benefit concert.
“We work with some top name talent,” Icognito said. “What I propose is some sort of acoustic show. What we would need is a venue for the performance.”
Icognito said that anyone interested in helping the effort for a benefit should contact him at (201) 866-56-EVENTS.