DURHAM (WTVD) — A family is going to incredible lengths to help a Durham girl battling a rare and fatal illness.
It’s the best Mother’s Day gift the girl’s mother could have asked for.
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, Maddison’s mother, Patsy Castillo, turned to WTVD and Facebook for help. Donations came pouring in.
“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.
Another local mother saw her story and knew they were connected.
“I have this little guy to thank,” said Shannon Chestnut 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.
Chestnut knew her family had to help, and they 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.
“Maddison just makes you look at the world completely different, and I’m just grateful to be her mother,” said Patsy.