Go Garage Hopping for the Gift of Life
by Gary M. Pinkston
Record Gazette
Cherry Valley--Samantha Dodaro will be 20 months old this Labor Day weekend. That puts her about 8 months into borrowed time because children like Samantha typically die sometime between their 1st and 2nd birthdays.
Samantha was born with Type 1 Spinal Muscular Atrophy. Type 1 is the most severe kind of this genetic disease that destroys the muscles through atrophy due to lack of nerve control from the spine. SMA is the number one genetic killer of children under the age of 2 yet gets little media attention or funding for research towards effective treatment or a cure. Samantha's parents intend to change that by inaugurating an annual SMA fund-raising golf tournament, the Samantha Dodaro Golf Classic & Raffle, to raise money for the SMA research and support organization The Families of SMA. But that won't help the Dodaro's with the considerable costs of caring for their own daughter. For that, they are holding a huge garage sale at their Cherry Valley home over the Labor Day holiday weekend.
"SMA has no cure," says Samantha's mom, Wanda. "It was only a few months ago, back in January when she got so bad, that we even discovered any useful therapy."
Samantha went dramatically downhill at the end of her first year, losing even her ability to swallow, but has made significant gains since her parents opted for some newer therapies developed by a Dr. Bach in New Jersey. Respiratory failure is the most common problem for SMA kids and the standard treatment is to give them a tracheotomy and put them on a respirator. Samantha has not had a tracheotomy and uses a respirator only while she sleeps. This allows her breathing muscles to rest during that time. She also uses a machine that forces her to cough several times a day to help keep her lungs clear.
Respiratory infection is a major threat to SMA patients so Samantha seldom goes out in public and never receives visitors having even a mild cold, as such an infection could easily prove fatal to her.
"But some children have lived to be 6 or even 8 years old under Dr. Bach's therapies," says Wanda.
If these therapies can keep little Samantha going a few more years maybe other treatments will become available by that time. There is no way to know what the future might hold. But Samantha Dodaro's parents, Jim and Wanda, aren't just waiting around and hoping for the best. They are actively participating in the improvement of their daughter's condition while at the same time working to raise money for SMA research. In the meantime, they constantly seek ways to cover the immediate costs of caring for their daughter and have scheduled their big holiday weekend garage sale to help defray those costs.
With help from friends, neighbors and other donors the Dodaro's have pulled together the equivalent of a large, multi-family garage sale that will feature a nice collection of bicycles, baby items and other household stuffs. The sale will be held at the Dodaro family's Cherry Valley residence on Friday, Saturday and Sunday, Aug. 31 through Sept. 2. The sale will run from 8 a.m. to 4 p.m. each day. All proceeds from the sale will go directly into a trust fund set up on Samantha's behalf.
|
|
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
