Community comes together to help 4-year-old girl suffering from Pompe disease

A 4-year-old girl has a rare form of Pompe disease and relies on several medical devices to keep her alive.
March 14, 2014 4:21:06 PM PDT
A local community is rallying around a little girl battling a rare and fatal disease.

Maddison Castillo, 4, relies on medical devices to keep her alive. However, last week's storms threatened to knock out power to those machines, putting Maddison's already fragile life in danger.

Patsy Castillo has dedicated her life to keeping her daughter Maddison alive. She has turned the family living room into a makeshift hospital room surrounding her lifelines -- the 4-year-old's stuffed animals and handmade decorations for comfort.

"The doctors told me she wouldn't make it past a year old," Patsy said.

Maddison was born with Pompe disease, a rare genetic disorder that damages the body's muscle and nerve cells. Still, the form of her condition is even more uncommon and difficult to treat. Maddison's body is fighting the medicine she needs to save her life.

"It's the worst thing as a parent to feel so helpless because there's nothing you can do," Patsy said.

Her family moved to Durham so Maddison could participate in a clinical trial at Duke Children's Hospital. While she battles to beat the odds, Maddison requires a ventilator and feeding pump around the clock.

"She needs those things to help her keep thriving," Patsy said.

Yet, last week's storm left her in a panic.

"The lights flickered a few times and it was really scary knowing that if the storms blow out power, what are we going to do?" she said.

A group of women heard about her fear and took to social media to help. They are raising money for a generator to make sure those critical machines keep going. Her doctor says Maddison also needs a defibrillator.

»Click here to check out Maddison's Facebook page- Angels for PB. «

As Maddison's medical bills continue to pile up, Patsy is pleading for help.

"She's been through so much. She's a miracle, and everyday she's here, that's a miracle. To see that other people want to help her stay in the best possible health, it's just heartwarming to me," she said.

» Click here to help the Castillo family. «

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