Carney
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."