MD can't stop her from seeking a cure
by JOHN LASKO
News-Times reporter
Amherst resident Talyah Bernardone was only 10 months old when doctors diagnosed her with congenital muscular dystrophy (CMD).
She is not confined to a wheelchair, but Bernardone cannot run or climb stairs and needs help getting back on her feet if she were to fall.
"It's tough because I've seen a lot of my friends get worse, like when I was seven, one of my friends who had a worse form of muscular dystrophy died, so it's just been really tough not only physically but also emotionally," she said.
Muscular dystrophy is a slow, progressive genetic, degenerative disease which primarily affects proteins necessary for muscle growth and development. While Bernardone does not remember when her parents told her she had the disease, she does remember the doctor telling her parents she would never be able to walk.
"Apparently, I kind of knew that I would never walk, but I was so determined. Like for instance when my parents would be sitting down and I would be sitting down, I would be telling them walk, walk, walk and they would have to help me learn how to walk," Bernardone said.
When she was three years old, she began volunteering for the Tucson, Ariz.-based Muscular Dystrophy Association (MDA) which is chaired by actor and comedian Jerry Lewis, who also suffers with a form of muscular dystrophy.
Now 18 and a senior at Magnificat High School in Rocky River, she has held successful backyard carnivals every summer in August at her Amherst home for the past five years and raised nearly $5,000 for MDA.
All the proceeds generated from the backyard carnivals go toward sending kids with muscular dystrophy to Camp Cheerful in Strongsville.
"The money also helps fund research. It helps fly families in to the camp to see their child and it also helps pay for special equipment like wheelchairs and ramps," Bernardone said. She has attended Camp Cheerful for eight years. "It's a week-long camp in June and they have activities that kids with muscular dystrophy can participate in that normal kids can do like baseball, basketball, swimming."
The nightlife at the camp is not bad either. Counselors host such events as casino nights and karaoke nights.
Bernardone has been named the state's goodwill ambassador for the local chapter of the MDA. This means she travels to different companies and organizations throughout the state who have donated in the past to MDA, explaining to them what their donation means, what it is used for, and what positive things MDA has done for Bernardone and others like her living with the debilitating disease.
If that was not enough, Bernardone is also the disability awareness speaker; she travels every year to Columbus and speaks to the International Association of Firefighters about living with muscular dystrophy.
"It's very exciting to get to do this every year because I just like to help out the local and national chapters of the MDA, with the hopes of one day finding a cure for this disease," she said.
During the local muscular dystrophy telethon, which airs Sunday during the Labor Day weekend on WBNX-TV, Bernardone presented a check from this year's backyard carnival in the amount of $1,000 to the local MDA chapter.
In turn, Ronny Duncan with WBNX-TV presented Bernardone with a plaque honoring her 15 years of service from the national chapter of the MDA.
"I didn't know I was getting the award, but apparently my Mom knew, so she was kind of prepping me for it, I guess," Bernardone said.
Nearly two weeks after she was presented with her award from the national chapter of the MDA, Ohio governor Ted Strickland presented Bernardone with a proclamation for her continued service.
"It was really exciting and I was a little shocked because I had no idea that I was going to get these two awards," she said.
After graduating high school next year, Bernardone plans on either attending Marietta College, Wright State University in Dayton, Xavier College in Cincinnati, John Carroll University in Cleveland or Edinboro University in Pennsylvania with the hopes of one day becoming a broadcast journalist.
Bernardone's parents are David and Jane Bernardone. She has a younger brother Miko, 14, who is a freshman at St. Edwards in Lakewood.
|
