NewburyportNews.com, Newburyport, MA

PortWatch

April 25, 2014

Caped crusaders

Family of girl with tumor disorder plans superhero fundraiser

As the mother of a 5-year-old diagnosed with neurofibromatosis type 1, D’Ann McBryan knows that there is little she can personally do for her daughter.

But the Amesbury woman remains determined to help in any way possible.

“I have to breathe and know that all I can do is raise money for research,” McBryan said. “Basically, that is all it comes down to. I can’t fix it, I can’t do anything about it, really. So, I just put my energy and angst into doing the fundraising for research.”

McBryan’s daughter, Molly, was only a day old when doctors noticed the tan marks on her skin.

“There were cafe au lait spots that were appearing on her skin, and her head circumference was kind of off the charts,” McBryan said. “She also has a sunken chest, her chest wall goes inwards. Those are the things they noticed right off the bat. They had us into Children’s (Hospital) to get an MRI of the brain, and that’s when they found the tumor and they added it all together.”

A disorder that causes tumors to grow on any nerve at any time, NF1 strikes 1 in every 3,000 births worldwide. The disorder can cause blindness, deafness, loss of limbs, facial disfigurement, skeletal defects, learning disabilities, chronic pain, impaired balance, mobility problems and cardiovascular issues. In some cases, it’s fatal.

“It’s very unpredictable,” McBryan said. “She has one tumor on her optic nerve right now that they are watching. One day, it could take her sight. One day, it could turn cancerous, we don’t know. So, it is a wait-and-see kind of thing.”

While the McBryans have to take every day as it comes, life itself still goes on. The family has put together a “Spring for a Cure” fundraiser during the first weekend in May each year for the past three years.

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