is holding a coat sale to support SMA research,
where she will be selling used winter coats that
are in good condition for $5 each at her home on
Oct. 9. The sale will run from 9 a.m. to 4 p.m.
at 140 Briarcliff Road in Hamden, and all
proceeds will donated to Families of SMA.
Before meeting Tramontano, Carney knew nothing about the disease. Since then she has become the fundraising coordinator for the Connecticut chapter of Families of SMA, an organization started by concerned families that attempts to provide education and support for families affected by the disease and funds research.
Carney began working with Tramontano last year at West Woods School for about three hours during the school day. Now he is attending all day kindergarten and she spends the whole day with him.
"We are side-by-side all day. It's the greatest job in the world," Carney said. "He's very cute and it's very rewarding."
There are five types of SMA and Tramontano has Type II, meaning he can't put weight on his legs and he has a weakened respiratory system. He has to constantly worry about getting sick because it could be fatal, Carney said.
"He's a wonderful little boy. He's absolutely adorable," Carney said. "He's a very courageous little boy. He goes to school in a wheelchair because he can't walk."
Currently there is no cure for SMA and Tramontano travels to Utah every three months for experimental drug treatment. Tramontano lives with his parents Jennifer and Harry of Hamden and has a little brother Daniel.
"I think he has gotten a little stronger since he's started the treatment," Carney said. "But they need a cure. There's nothing available to treat this disease except the experimental treatment."
The disease is rare and one out of every 6,000 babies is born with the disease. For a child to have the disease both parents have to be carriers of the gene that causes SMA and one out of 40 people carry the gene. The child of two carriers has a one in four chance of developing SMA.
The coat sale will be one of many fundraisers Carney is holding. In August she held a tag sale and raised $3,600. She also sold lemonade during the summer to support the cause.
"I was trying to come up with another way to raise money without putting stress on the community," Carney said. "A coat drive will help single parents. They can get a coat in good condition and area giving to a good cause at the same time."
Carney hopes to have about 100 coats for sale in all sizes and for both genders. About 15 area cleaners have agreed to clean the coats that need to be dry-cleaned at no cost. Carney will also be washing and drying other coats at her home.
"The coats will be clean and in good condition. Some of them even have tags on them and they've never been worn. They are worth $5," Carney said.
Carney said her goal is to make sure Tramontano and children like him have a chance.
"It doesn't have a cure. I am hoping we can make a difference and he can be cured or at least not get any worse," she said.
Carney said the community has been wonderful in helping her raise money for this cause. She is also planning on putting buckets to collect change for Families of SMA in local businesses.
Despite his disability, Tramontano does everything he can to be a normal kid.
"He goes to school with excitement and plays freeze tag at recess," Carney said. "I don't think he realizes he's disabled or if he does he isn't letting that stop him."