10 y.o. goodwill ambassador spreads word about muscular dystrophy
Published: July 31, 2006
When Annah Mobus was diagnosed with the most severe kind of spinal muscle atrophy - a kind of muscular dystrophy - as an infant, her mother, Jenifer Woody, was told Annah probably wouldn’t live past age 2.
“I didn’t believe them,” Woody said.
Through the years, she pushed for experimental treatments for Annah.
One was noninvasive ventilation protocol, which used a machine to help Annah breathe at night.
Another was an experimental amino acid diet.
Joe Imel/Daily News
Heather Costello with Fred’s Minit Mart poses for a mug shot Wednesday during a Muscular Dystrophy Association fundraiser at Outback Steakhouse.
Since Annah started the noninvasive ventilation protocol when she was 4, “her health has steadily improved,” Woody said.
Since starting the amino acid diet Annah, has gone from 35 pounds at age 7 to 87 pounds now, at age 10 and nearly 5 feet tall.
“And that has really improved her health,” Woody said.
Now, Annah is preparing to go to fifth grade at Briarwood Elementary School.
Since January, she has been goodwill ambassador for the Muscular Dystrophy Association region that covers southern Kentucky and middle Tennessee.
Woody said she is very proud of Annah.
“She’s accomplished so much,” Woody said Wednesday as Annah was preparing to be the celebrity judge at a MDA fundraiser at Outback Steakhouse in Bowling Green.
Annah said she was excited to be at the event, where she saw a larger-than-life poster of herself.
“It’s kind of cool,” she said of the poster. “Very cool. My sister (Krystan Woody) says I’m famous.”
Annah likes her job as goodwill ambassador because it lets her spread the word about MDA, which funds services and equipment for those with muscular dystrophy and research that looks for cures for the disease.
“If a person has muscular dystrophy they should know (more) about (MDA) so maybe they can have fun” at muscular dystrophy camps and more, she said. Those who don’t have the disease should know more “so they can raise money for those who do.”
Annah’s parents, including her dad, Army Staff Sgt. Kenneth Woody, have never treated her as if she’s disabled, though she has never been able to walk.
“We’ve treated her like a child who just happens to have to use a wheelchair,” Jenifer Woody said. “She’s treated so normal she doesn’t see herself as disabled. She takes vocal lessons and has been a cheerleader with Warren County Parks and Rec and is a Girl Scout.”
Annah says she wants other kids to know that children with muscular dystrophy are really no different from them.
“Except we can’t walk,” she said.
Susan Whatley, health care services coordinator for the MDA region, said Annah is an “excellent” goodwill ambassador.
“She never meets a stranger,” Whatley said. “What I love about Annah is that not only does she answer questions very intelligently, she also asks questions. She has a high curiosity about other people and gets them involved in conversations” about muscular dystrophy.
But for a long time, Jenifer Woody didn’t want Annah to be a goodwill ambassador, even though she’d been asked to do the job.
“I didn’t want her to get any kind of entitlement complex,” Jenifer Woody said. “Now, she’s old enough to understand that she’s not doing it to get things for herself. She’s doing it to help other people.”
The job is one that keeps Annah busy.
“I have to do a lot, go a lot of places and meet a lot of people,” she said.
Recently, she visited WUHU-FM and Royal Crown Bottling Co. to talk about MDA.
Often, she travels to hospitals for her work.
At times, she’s encouraged other kids with muscular dystrophy to do what they need to do to be as healthy as they can be.
When a little girl at camp once thought those in charge were being mean because they wanted her to wear her back brace, Annah had a long talk with her to explain that if she didn’t wear her brace the inevitable curving of her spine would come more quickly.
Annah, who must wear a brace every day to slow the process of the scoliosis curving her spine, and keep her upright so breathing is easier, is practical about her health concerns.
On Aug. 14, she’ll have titanium rods surgically installed on both sides of her spine to correct its curvature. The surgery should help her breathe more easily, as well.
While Annah’s spine won’t grow any more after the surgery, Jenifer Woody said, “at this point, she’s taller than most kids with her symptoms,” so it’s a good time for her to have the operation.
Annah says she’s “a little iffy” about the thought of the surgery, “but I’m not going to doubt it or deny that I have to have it.”
The thing she dreads the most about it is the long recovery time that’s expected.
She may not be well enough to return to school until right before Halloween.
And she’s frustrated that she can only go to a few days of school before she has to leave for the surgery.
“Basically, I’ll get to meet all my friends and leave,” she said. “What’s the point?”
Annah loves attending Briarwood.
Jenifer Woody said those at the school have “been fantastic” to Annah.
“They put in a sidewalk so she could get from the playground to the basketball court,” she said. “They’ve gone above and beyond what they were legally supposed to do.”
Annah said she doesn’t mind answering questions kids at school have about her muscular dystrophy.
She said she thought it was fun to show them how her motorized wheelchair works.
Annah is excited about things that help her be more mobile.
On Wednesday, before she began her judging duties at the fundraiser, she said she was thrilled to show MDA Program Coordinator Angela Mayer her family’s new minivan, which has a wheelchair lift she can operate with a remote control.
In the family’s other van, “we actually used portable lawnmower ramps” to roll Annah’s wheelchair into the van, Jenifer Woody said.
And Jenifer Woody had to lift Annah into a seat. Now, Annah can wheel herself onto the lift and can raise herself into the van via the remote control.
“And the top of it opens,” she said of the van’s sunroof.
Mayer was happy for the family she’s become friends with through Annah’s ambassadorship.
“After spending four or five hours together in a van (while traveling to MDA events), you become good friends,” Mayer joked.
But she’s serious about her admiration for Annah, who wants to give to other people through her role.
“I love Annah, actually,” she said. “Annah and I are going to donate our hair in a little over three weeks to Locks of Love,” an organization that has donated hair made into wigs for people who have lost their hair to illness.
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