Teeing-it-up For a Young Life
by Gary M. Pinkston
Cherry Valley--"She's 19-and-a-half months old now," says Wanda Dodaro of her daughter, Samantha, emphasizing the "and-a-half". You or I might not place much significance on the two-week difference between 19 months and 19 and-a-half months, but to the parent of a child with Spinal Muscular Atrophy, every week, every day of life after their first birthday, is a victory worth celebrating.
Samantha Dodaro was born with Type 1 SMA, 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 years old, 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. The first of these tournaments will be held at Jurupa Hills Golf Club in October.
"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."
Life expectancy for children like Samantha is only 1 to 2 years. She 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 and, this fall, will launch the first annual Samantha Dodaro Golf Classic to benefit the Families of SMA. FSMA is an international non-profit SMA research and support organization with full federal 501(c)3 tax deductible status.
Scheduled for October 25, the tournament activities will begin at 8:30 a.m. with the shotgun, best ball start going off at 10:00 a.m. The tournament will be preceded by a putting contest. A buffet lunch following the golf is included in the $75 per player entry fee. A raffle of donated prizes will be held during the lunch (you must be present to win.)
Companies are still being sought to act as tournament sponsors and hole sponsors and to provide prize donations for the raffle. To join in this effort to fund SMA research by either playing in the first Annual Samantha Dodaro Golf Classic or by providing sponsorship or prizes for the tournament and raffle, call Wanda Dodaro, 845-0336 or Karen Gates, 888-3282 ext. 3675.