Local boy featured on MDA telethon
By Keri Lunt
Staff Writer
Published on Sunday, August 31, 2008 4:38 PM MST
Like almost any other 12-year-old boy, Tyler Black enjoys sports, video games and the Arizona Diamond-backs. The only difference is that Tyler has Charcot-Marie-Tooth disease— a form of muscular dystrophy.
This year, Tyler was picked as one of two people from this region to be the subject of a videotaped profile that will appear on the national broadcast of the Jerry Lewis MDA Telethon.
Tyler’s parents, John and Kris Black, realized something was wrong when at the age of 5, Tyler “couldn’t keep up,” Kris said.
He was diagnosed with the neurological disorder, and while at the Children’s Clinic for Rehabilitation Services in Tucson, he was referred to the Muscular Dystrophy Association.
MDA staff among other things, told the family about a summer camp in Heber for children with muscular dystrophy. Tyler has attended the camp for four years. At the camp, children play wheelchair soccer, baseball, ride horses, make crafts and play games.
During his second year at camp, Tyler met Joyce Vyriotes. Vyriotes is a health care services coordinator for MDA. He and Vyriotes became fast friends. Soon after they met, MDA chose Tyler and his parents to be profiled on the 2007 Tucson broadcast of the Telethon.
An interview with the Black family and highlights from camp will be on the broadcast.
Last year before the telethon Tyler held a fund-raiser at Thatcher Middle School to raise money for MDA. “Caps for a Cure” day allowed children to donate $1 to the cause, and they could wear a hat on Friday. The project raised $790, which was presented to MDA on the Tucson broadcast of the Telethon.
Tyler plans to host the fund-raiser again this year before the national telethon and expand to the primary and elementary schools.
Black uses leg braces to keep himself stabilized and uses a wheelchair for long distances. Kris said from Tyler’s knees down and from his elbows down he has what she called an “electric short”— meaning the brain doesn’t tell the nerves how to work correctly.
The disease causes muscle weakness and wasting, and Kris said too much exercise or writing can do more damage than good.
Though Tyler’s disease is incurable, Black said, Tyler is hopeful and hardly ever negative. Tyler’s favorite subject is math, and when he grows up, he said he’d like to be a coach, work with the Diamondbacks or be a scientist.”I don’t notice (my disease) that much,” Tyler said.
The telethon begins at 6 p.m. on Aug. 31. In the Thatcher area, the national telethon and local segments can be seen on KGUN, Channel 9.
This year, Tyler was picked as one of two people from this region to be the subject of a videotaped profile that will appear on the national broadcast of the Jerry Lewis MDA Telethon.
Tyler’s parents, John and Kris Black, realized something was wrong when at the age of 5, Tyler “couldn’t keep up,” Kris said.
 Tyler Black takes a swing while playing baseball on his Nintendo Wii. He will be featured on the Muscular Dystrophy Association Telethon that begins at 6 p.m. on Aug. 31. In the Thatcher area, the national telethon and local segments can be seen on KGUN Channel 9. Photo by Keri Lunt |
MDA staff among other things, told the family about a summer camp in Heber for children with muscular dystrophy. Tyler has attended the camp for four years. At the camp, children play wheelchair soccer, baseball, ride horses, make crafts and play games.
During his second year at camp, Tyler met Joyce Vyriotes. Vyriotes is a health care services coordinator for MDA. He and Vyriotes became fast friends. Soon after they met, MDA chose Tyler and his parents to be profiled on the 2007 Tucson broadcast of the Telethon.
An interview with the Black family and highlights from camp will be on the broadcast.
Last year before the telethon Tyler held a fund-raiser at Thatcher Middle School to raise money for MDA. “Caps for a Cure” day allowed children to donate $1 to the cause, and they could wear a hat on Friday. The project raised $790, which was presented to MDA on the Tucson broadcast of the Telethon.
Tyler plans to host the fund-raiser again this year before the national telethon and expand to the primary and elementary schools.
Black uses leg braces to keep himself stabilized and uses a wheelchair for long distances. Kris said from Tyler’s knees down and from his elbows down he has what she called an “electric short”— meaning the brain doesn’t tell the nerves how to work correctly.
The disease causes muscle weakness and wasting, and Kris said too much exercise or writing can do more damage than good.
Though Tyler’s disease is incurable, Black said, Tyler is hopeful and hardly ever negative. Tyler’s favorite subject is math, and when he grows up, he said he’d like to be a coach, work with the Diamondbacks or be a scientist.”I don’t notice (my disease) that much,” Tyler said.
The telethon begins at 6 p.m. on Aug. 31. In the Thatcher area, the national telethon and local segments can be seen on KGUN, Channel 9.
1 comment:
What a nice story. I'm wondering if you know about the Charcot-Marie-Tooth Association (http:/www.charcot-marie-tooth.org)? They are a great resource in terms of patient information. Moreover, they fund many reseachers seeking answers for CMT. They have just launched the Strategy to Accelerate Research (STAR). Involved researchers believe they will have therapies for CMT in 3-5 years and a cure within 10 yrs. The project needs 10 million in funding. Many people are helping to make this happen. I have team working on CMT awareness and promoting STAR. Please check out the website. You can also reach me at lgarveyATgmdadvDOTcom.
(I'm using words instead of the symbols in my written email to help decrease spammmers. Use the actual @ and . when you reply.)
I hope to here from you.
Lori Garvey
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