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Updated: 11:12 PM Sep 5, 2010
Family talks about daughter living with Muscular Dystrophy
Little Isabelle or "Bean" as her family calls her, is a bright eyed 7-year-old who's lived a very different life than most girls her age.
Posted: 10:52 PM Sep 5, 2010Reporter: Megan Peterson Email Address: megan.peterson@weau.com |
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A quarter million kids and adults are living with some form of muscular dystrophy.
It’s a disease that weakens their muscles. Taking away the movements and everyday way of life that most of us take for granted.
For this year’s 45th Annual Jerry Lewis MDA Telethon on Labor Day we’re featuring a couple Western Wisconsin families benefiting from the money you donate to the Muscular Dystrophy Association.
"Hi, my name is Isabelle," Isabelle White said with a big smile.
"Right away when Isabelle was born she was really weak and had a hard time eating. About four months in she wasn't meeting milestones and things like that so we started to wonder," her mother Tammy remembered.
Little Isabelle or "Bean" as her family calls her, is a bright eyed 7-year-old who's lived a very different life than most girls her age.
"You have congenital muscular dystrophy with myosin deficiency. She kinda has the strength of a newborn still except for she's now a 7-year-old. So cognitively she's really a normal everyday 7-year-old who likes to play and learn," Tammy said.
"I get the most attention," Isabelle teased to her sister.
At seven months old her parents got the news that her body wasn't working like normal.
"It seems really surreal at first and you just think, you know, you don't ever want anything wrong with your kids and then you're told that she'll never walk and all the things that she'll never do," Tammy said.
Isabelle can move her hands and feet, but unlike other 7-year-olds she doesn't have much strength in them, making her depend on others for most everything she does.
"A lot of our day has to do with doing exercise, using the ball. She has to go in the standing frame. She goes swimming almost every day,” Tammy said.
"Sometimes I help do her machines in the morning, do her vitamins and different things," Isabelle’s 10-year-old sister Tori said.
Still that lack of muscle doesn't stop "Bean" from playing with her sisters and entertaining her family every day.
“I ran around the go cart track with Tori," she exclaimed.
"One of the things we've always been really big on is we try to make it as accessible to do everything that we can make her be able to do," Isabelle’s mom said.
"I usually can find something like sticks and I can pretend they're two people," Isabelle added.
The Muscular Dystrophy Association helps Isabelle and her parents. For her mom it lessens the stress of paying for all of her equipment and doctor's visits. And for Isabelle it gives her the chance to go to camp every summer and meet more kids just like her.
"Oh, oh, the first time I got there we raced down the hall," Isabelle remembered.
"For a week she gets to go be with kids and she doesn't have to be told that she can't do anything because she can participate in every activity they have because it's geared to kids with different abilities,” Tammy said.
An imaginative girl, who's just one shining example of how easily a life can change, thanks to your support.
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