14-year-old making huge difference in fight against neuromuscular diseases

This upcoming Labor day holiday weekend marks the 48th annual MDA “Show of Strength” telethon. It’s set for Sunday evening at 9 p.m. on KESQ and ABC stations nationwide.

The annual shows have done so much for the organization– helping so many people with Muscular Dystrophy and other neuromuscular diseases.

A local child has been a big part of the MDA programs. Abbey Umali, 14, of Redlands has been a familiar telethon face for years now appearing on the tele casts since 2006.

She sang a song with a country star, Billy Gilman, in 2008, and was joked several time by longtime emcee, Jerry Lewis. Umali served as MDA’s National Goodwill Ambassador for four years and as California’s MDA Goodwill Ambassador for two years winning over hearts to the cause which researches muscular dystrophy and helps those living with it.

Perhaps her biggest thrill was singing with country star, Darius Rucker, on the stage of the Grand Ole Opry in 2011.

“It was really fun,” said Umali, “because the Opry is such a cool place and for country music, but then to get to do it with him too is really amazing.”

Umali’s seemingly charmed life however is accompanied by the reality she is one of so many living with forms of MD and other neuromuscular diseases.

Abbey’s mother knew right away her daughter wasn’t developing normally, even within her first year.

Wendi Umali said, “Sitting up, holding her balance when she sat up, pulling to stand. That was pretty delayed.”

Wendi Umali, a physical therapist, started looking for help, but didn’t find real answers until a year and a half later. That’s when the family visited the Loma Linda University Medical Center and it’s Pediatrics Clinic.

Wendi said, “Honestly we found out more in an hour then we had in a year and a half.”

DNA testing confirmed the diagnosis of Dejerene Sottas, a form of Charcot Marie-Tooth, a very rare neuromuscular condition with no known cure or treatment.

The Pediatrics Clinic Director, David Michaelson, MD said. ” The world has become a lot more friendly for people who have less strength then it used to be.”

Michaelson adds the MDA offers adaptive equipment, support and expertise to people with Muscular Dystrophy allowing most to continue leading vibrant and engaging lives.

Michaelson said, “We don’t have a lot of treatments for these conditions that would change the quantity of life. But we do have a tremendous amount to share that would affect the quality of life.”

MDA has been a big part of the Umali family’s life bringing hope, support and friendship.

“We feel very blessed that we got involved with MDA.” Wendi said. “Our lives changed for the better. We had a good before, but even richer lives now.”

Abbey’s even attended MDA’s kids summer camps. Abbey said, “It’s really fun for me. I love it so much. I’ve made so many friends, and it’s really cool because when I go there it feels normal. It doesn’t matter what you have.”

Abbey’s raised more than $70,000 for MDA through lemonade stands and readathons. All this as she continues to adapt to her changing condition.

Abbey said, “The muscles in my legs are weaker, and we’re starting to notice it in my hands too. So I get tired easily and I have a hard time holding my bags and stuff.”

With the doctors and staff at Loma Linda, her loving family and drive to succeed Abbey is finding new ways to live life to it’s fullest.

We’ll see both Abbey and Rucker on Sunday’s two hour show. You don’t have to wait to donate however.

Text a donation to MDA at 50555. Each text to that number will donate $10 to help find cures and treatments for MDA while providing needed support for those living with it.

All charges are added to your cell phone bill.

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