September 13, 2006
Residents Rally To . . .
Bring Baby Evan Home
A mother, cradling her infant son, kissing him gently and holding him close. It's an image that's become a familiar sight for many as flyers sporting the shot are splashed across cash registers and counters in scores of shops across the East End.
The photo of Speonk resident Adrienne Cotter and her infant son, who turned four months old on Monday and who has been hospitalized at Stony Brook University Medical Center since his birth, is one that has touched the hearts and minds of an entire community who have banded together to bring baby Evan home.
Evan was born with Trisomy 13, a syndrome associated with the presence of a third, or extra number 13 chromosome in every cell of his body. The disorder, said Adrienne, is not genetic. "It can happen to anyone, at any time. It's a fluke thing."
Trisomy 13 is associated with multiple abnormalities, including defects of the brain, congenital heart disease, abnormal placement of the heart, mental retardation, seizures, extra digits, facial and scalp defects and hernias.
And while Trisomy 13 occurs in about 1 of every 5,000 live births, many infants are miscarried. Of those babies who do survive birth, more than 80% do not survive the first month. "If they make it to a year," said Adrienne, "it's big."
But Evan has defied statistics. "He's a miracle," said the proud mother.
Despite the odds, Adrienne, her husband Mark, and their children, Marc, 10, and Brooke, 6, have held strong to their belief in the power of prayer — and miracles. "There's always hope," said Adrienne.
In fact, for all the challenges, the Cotters feel blessed by their new baby. "If somebody said to me, 'We'll switch and give you a son that's perfect,' I would say no," said Adrienne. "I want Evan. To me, no matter what he does, he's always going to be perfect."
Unlike other victims, Evan does not have any facial anomalies or disfigurement, extra digits, or congenital heart disease, although he does have cataracts in his eyes and a small opening in his heart; the hope is that the hole will close naturally.
Adrienne is a mother who feels the best place for her baby is with his family. "Right now, I'm fighting to get him home."
But the road toward Evan's homecoming has been stacked with obstacles, namely the staggering costs associated with the 24-hour nursing care necessary as the Cotter home is basically equipped for an intensive care unit complete with a ventilator, oxygen, trach tubes and a portable machine to which Evan will be attached.
Adrienne said the cost for 24-hour home coverage is prohibitive. "That's something you never look into, with your insurance." She added that the family's insurance "said it would cover $1000 a year" for home nursing costs, which could add up to $15,000 a month for agency nurses.
That's where the community has stepped up, with friends organizing fund-raising efforts. Although Adrienne said the Cotters were hesitant to ask for help, friends with whom she'd grown up in Ireland and who now live nearby insisted on lending helping hands. "Everyone has been just amazing," she said, with phone calls and offers to babysit, letters of support and homemade dinners delivered to her door.
A fund-raiser for Evan is slated for September 30 from 7 p.m. to midnight at Casey's on Montauk Highway in Westhampton Beach. Lynne Jones, owner of Lynne's Cards & Gifts on Main Street in Westhampton Beach, is also selling special lollipops at the store.
There is also a special quilt, with squares available for a $50 donation, to benefit Evan.
"Everyone's really come together," said Jones.
As for the Cotter family, they're counting the days until they can bring their baby boy home; Adrienne is hoping for a homecoming within the next few weeks.
"It's been a long road, and believe me, you go through every emotion," she said. "But I absolutely love this child. Every day I have with him is just a blessing."
Donations can be made payable to: The Baby Evan Foundation, P.O. Box 1001, Westhampton Beach, NY, 11978. Raffle tickets and quilt information is available at Lynne's Cards & Gifts, Main Street, Westhampton Beach. For more information on the fund-raiser, call Anita at (631) 998-3094, or Mags at (631) 874-3963.