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Valley Child Works through Struggles with Rare Condition - NBC29 WVIR Charlottesville, VA News, Sports and Weather

Valley Child Works through Struggles with Rare Condition

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A Shenandoah Valley 6-year-old is one of the very few in Virginia who suffer from Aicardi syndrome, a rare condition that only affects girls.

Madeline Hardin was just a baby when her mom, Brooke, first noticed the strange way Madeline moved her body and her eyes.

“Very symmetrical, but just...it didn't look like what a normal baby would do,” Brooke said.

So she took Madeline to the pediatrician. Madeline’s care was immediately transferred to the University of Virginia Medical Center in Charlottesville. Two days later, Madeline, then 3 months old, was diagnosed with Aicardi syndrome.

As Brooke describes it, “she is missing parts and pieces of her brain to put it simply.” Specifically, the part of the brain that allows the two sides to communicate, affecting speech and complex movement. Madeline also has lesions on her retinas and epilepsy.

“It's very rare. There's only five girls that I know of in the state of Virginia that have this syndrome,” Brooke said.

Brooke says Madeline’s condition means she is developmentally equivalent to a 1-year-old, but it doesn’t keep Brooke from finding every opportunity she can to help her daughter grow.

“I don't think at any point we'll say she won't be able to do something,” she said.

Brooke takes Madeline to a dozen therapies every single week from all over the Shenandoah Valley.

“Physical therapy, occupational therapy, speech therapy, vision therapy. She does aquatics, she does horseback riding, she does intensive therapies that go for weeks at a time,” Brooke said.

In fact, Brooke and Madeline are heading back to the Richmond Hope Therapy Center for three weeks of intense physical therapy. Before they went there in January Madeline couldn’t stand very well on her own, but now she’s walking.

Brooke says the scary part of Aicardi is the seizures. Currently, Madeline averages four a day.

“You never know what your day's going to look like. You never know what's going to be that one seizure that makes her lose all of her ability. We've had seizures that we can't drink from a cup anymore and we lose abilities that we once had,” Brooke said.

Brooke says Madeline is more than Aicardi. She's just a 6-year-old with a happy spirit who happens to have special needs.

“Yeah the syndrome sucks, but there's a person in there,” Brooke said.

Brooke says they still don't know what causes Aicardi, and because it is so rare there's limited funding and research. To learn more about Aicardi, click here.

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