Two families brought together over local girl's battle with rare disease

A 4-year-old girl has a rare form of Pompe disease and relies on several medical devices to keep her alive.
May 12, 2014 11:57:28 AM PDT
A local family is going to incredible lengths to help a Durham girl battling a rare and fatal illness.

Maddison Castillo, 5, was born with Pompe disease, a genetic disorder that damages the body's muscle and nerve cells. She relies on expensive medical equipment and electronics to keep her alive, and storm-related power outages could be a matter of life and death.

With bills piling up, ABC11 aired her mother's plea for help in March. Messages and thousands of dollars in donations started pouring in.

"It was just amazing the amount of support and just the messages we got," said Maddison's mother, Patsy Castillo. "There was a $1,000 donation made, I believe, the night of your story."

Bitting Electric also installed a backup generator system in the Castillo's rental apartment free of charge. Hundreds of dollars worth of supplies, once hard to come by, are no fully stocked.

"She was able to get a defibrillator, and this is life-saving," said Patsy. "I cried for about an hour after I got everything," said Patsy. "As a mother, it's incredible."

But it's what happened next, that left Patsy overwhelmed.

"I have this little guy to thank," said Shannon Chesnut of her infant son. "During one of our 2 a.m. nursing sessions, I was scrolling through Facebook and saw your story and immediately sent it to my dad and brother and said, you've got to see this, this family is like us!"

Chestnut's brothers both have Pompe disease. One of them passed away recently.

The mothers' connection was instant.

"Knowing what I know as a nurse and as a Pompeii family, that makes us just have a bond with Patsy and Maddison that I don't think most people could understand." said Chesnut.

Shannon, her brother and their father knew they had to help.

The trio are starting a foundation in Maddison's honor.

They're also working to get the family a wheelchair-accessible van and possibly a house to better accommodate their needs.

"There's no telling how far we can take this and the things we can do to make that little girl's quality of life better," said Chesnut's father, Claiborne Woods. "That's what this is all about."

"She just makes you look at the world completely different, and I'm just grateful to be her mother," said Patsy.

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

Click here to help the Castillo family


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