By Dan Bernardi, staff writer
The road has not been without bumps for Colleen Damato of Baldwinsville. She has lived through her son’s near death and has seen her normally active lifestyle come into serious jeopardy after being diagnosed with Multiple sclerosis (MS). While those setbacks could have grounded the beloved Van Buren Elementary teacher, they are a source of strength and the reason she and her son are now thriving.
When her son Sam was just two months old, Colleen and her husband Cono noticed one day that he was jaundice. They rushed him to Crouse Hospital and the news was devastating.
“At two months old his liver was pretty much shot because he had an autoimmune disease called Biliary Atresia,” Damato said. “It eats away your bile ducts, so his liver was storing bile, which was destroying it.”
For more than a month Damato and her husband stayed at his bedside, hoping and praying he would recover. Unfortunately, his condition worsened and the only option was a liver transplant. The family was airlifted to Wilmington Hospital in Delaware and eagerly awaited his turn on the organ donor list. Their fear escalated each day, thinking that their turn may come too late. As his condition continued to deteriorate, a doctor at Wilmington Hospital pitched the idea of a living donor, which would require someone they knew to donate part of their liver.
“When our surgeon told us about it I certainly was very interested in that, watching our son’s health fade away,” Damato said.
She was a match and wasted no time going into surgery to donate the left lobe of her liver in order to save her son’s life. The year following the organ transplant was a trying one for the Damatos, as her son’s health fluctuated up and down.
“We spent a lot of time living on the edge and going to Delaware at last-minutes notice,” she said.
He was on 21 medications and suffered through the medication side effects. But the family remained strong through the first year and now are raising a healthy, happy, smart and athletic 11 year old. Four years ago, Damato received the second devastating news of her life. She was diagnosed with MS, a degenerative disease caused by destruction of the myelin insulation covering nerve fibers (neurons) in the central nervous system (brain and spinal cord).
“It was definitely a big blow,” Damato described feeling after the diagnosis. “I’m really an active person and to hear that I might not be able to live that kind of lifestyle was devastating at first.”
She remembers going through mourning and shock, but vowed to do all she could to stay healthy and prevent the disease from holding her back. Many mornings before she goes to school, Damato heads outside, jumprope in hand. No matter if there are freezing temperatures or rain, she is there. She has come to be known as the ‘6 o’clock in the morning jumprope girl,’ by her neighbors.
“Exercise is a big part of what I do to help myself feel as good as I can,” Damato said. “Every morning before school I’m exercising.”
To prove to herself that MS is not keeping her down, she competed in her first Iron Girl triathlon this summer.
“I don’t know that I would have done that (before being diagnosed with MS),” Damato described of her participation in the Iron Girl. Damato trained for months prior to the event and even was sponsored by a neighbor who was inspired seeing her outside every morning with her jump rope. Damato finished in the top third of the field in her first Iron Girl and is already looking forward to next year’s event, which will be held the first week in August at Oneida Shores Park.
“I’m on a mission now, where I work hard for my health and want to prove to myself and other people that might be struggling, that it doesn’t have to be a sit at home diagnosis. If you feel good go for it!”