Abbey Umali and her family have been familiar presences on the Jerry Lewis MDA Labor Day Telethon for the past two years. Now this winsome and charismatic 8-year-old from California steps further into the spotlight as MDA’s 2008 National Goodwill Ambassador.
Anyone who watched Abbey during her live interviews on the Telethon isn’t apt to forget her, any more than they’re apt to forget angels of any other sort. She’s sweet, persuasive and an ambassador with impeccable credentials.
She acquired those credentials, in part, from having served two terms as MDA California Goodwill Ambassador. In that role her responsibilities were a mini-version of those she’s now tackling as the Association’s national spokesperson.
As California ambassador, Abbey and her parents, who live in Redlands, attended many MDA fundraising events such as Aisles of Smiles, the Gift of Hope gala, Stride & Rides, Lock-Ups, golf tournaments and Fill-the-Boot campaigns run by her heroes, the fire fighters.
Abbey’s mother Wendi says that when she asks her daughter which of the fundraisers she likes best, the youthful dynamo always seems to have a different answer.
“I finally realized that the events she likes best are the ones where she mixes most, where she’s made personal connections with the people involved,” Wendi says. “Abbey is amazing. She’s a joy and she radiates joy. She has a way of drawing people to her and making them laugh, and that’s part of her gift — having compassion and understanding for the people around her.”
Another of Abbey’s gifts is that she is a helper, a trait that’s reflected in her enthusiastic work for MDA — and also in the kitchen. She enjoys helping prepare her favorite foods, such as her mom’s vegetarian chicken burgers, macaroni and cheese, grilled cheese and Thai food, with extra cheese. She especially likes to get involved in the preparation process when s’mores are on the menu.
|Abbey at home with parents, Wendi and Joel|
It’s not in Abbey’s independent nature to like accepting help doing something she wants to do by herself. Fortunately, she’s able to do a great deal by herself, in spite of her neuromuscular disease.
Abbey has congenital hypomyelinating neuropathy, a form of Charcot-Marie-Tooth disease characterized by lack of coordination and balance, along with muscle weakness. She walks with the aid of leg braces. At this point, Abbey’s legs and balance seem to be the primary areas affected, causing frequent falls. Her upper body, including hand and arm dexterity, is not experiencing problems.
Abbey’s dad Joel, a dentist, says she copes with her mobility challenges in part by using two different types of leg braces. One is a two-piece design that allows her heels to move more freely. The other helps prevent hyperextension of her knees, and thus damage to knee cartilage.
“If there’s one thing we know about Abbey, it’s that she’s resilient. Nothing really stops her. I think the best thing about her personality and this disease is that she just doesn’t give up,” Joel says.
Queen of the capitals
Wendi, an experienced physical therapist, is the perfect companion for a young lady with a nerve and muscle disability. “Twenty years ago I would not have believed I’d be where I am now. But today, along with my husband, I’m not only Abbey’s biggest advocate, I’m also her personal physical therapist,” Wendi says.
|Abbey at work, with SUPERVALU grocery chain CEO Jeff Noddle
Wendi helps Abbey’s leg muscles with regular stretching exercises, but Abbey has plenty of other activities to promote her physical and mental well-being, too.
Her interests include: reading (Nancy Drew is tops right now), singing, dancing, riding her bike, swimming (especially good for muscles), playing the piano, playing games (especially cards), visiting the library and bookstores, acting in plays and traveling with her mom and dad. Her favorite places to visit near home include an alpaca farm in Oak Glen, San Diego’s Wild Animal Park and the San Diego Zoo.
Abbey has no pets at the moment (her crab “had a little accident”), but she’s considering a kitten or a hamster. In the meantime, she has plenty of stuffed animal friends, including Aggie, Priscilla, Lily and Bluie.
Her fondness for critters jibes well with her current plans to be a veterinarian when she grows up (earlier prospects of becoming an elementary school teacher, swimming instructor or hairdresser have faded).
In the meantime, she’s studying hard at the Montessori School in Redlands, where she’s a third-grader. Her favorite subjects are reading, math and geography. In the latter domain, she can reel off the names of every U.S. state’s capital city.
In proof thereof, she sat down backstage at the 2007 national Telethon broadcast with her good friend Luke Christie, who served as MDA National Goodwill Ambassador in 2006 and 2007, and suggested a good-natured contest to name the states’ capitals. The academically formidable Luke took a pass. “Abbey,” he said, “when you’re 13 years old like me, some things are more important.”
|Abbey at play in the pool, one of her favorite places|
Abbey’s neuromuscular disease and frequent contacts with MDA have been eye openers for the family. “We’ve been able to meet so many other families and see the struggles they go through, and that’s given us an awareness and knowledge that we can do something to help them in some way,” Joel says.
“Knowing that MDA is there and that we can give back to them has been really important to us. We’ve come to realize that even the small part we do is having a positive effect on kids we don’t even know.”
As for the kid he does know, every time a fire engine goes by, Abbey whoops and shouts, “Go fire fighters!” She’s got energy to burn, and she’s ready to use it.