Matthew Phelan, 6, with his mother, Erica Phelan, in their home in Lynn. Photo by Paula Muller
By Bridget Turcotte
LYNN — One Lynn family is coasting toward a cure for their son’s disease.
Matthew Phelan, 6, was diagnosed with Neurofibromatosis at 6 months old, when skin discoloration prompted his parents to bring him to see a doctor.
“We hadn’t heard of it and couldn’t really pronounce it,” said his mom, Erica Phelan. “We definitely couldn’t spell it.”
The genetic disorder causes tumors to form on the nerves anywhere in the body, and affects more people than Cystic Fibrosis and Muscular Dystrophy combined. One in 2,500 to 3,000 people suffer from NF Type 1, including Matthew. They often experience problems with sensation and movement caused by pressure placed on nerves.
Symptoms can include blindness, seizures, pain, small tumors on the skin, and freckles on the underarm and groin. Erica Phelan called the disease unpredictable, but said right now her son’s case is considered to be mild. He has a speech delay, low muscle tone and faces challenges with learning disabilities, but is an active, happy child.
“He’s always smiling,” Erica Phelan said. “He’s very happy and very inquisitive.”
He likes swimming at the Paul Lydon Aquatic Center in Danvers and learning kung fu. Swimming helps him focus and build muscle tone, and kung fu requires self control, said his dad, Patrick Phelan.
The family is continuously fundraising for Burlington-based Neurofibromatosis Northeast, a nonprofit focused on treatment and finding a cure.
On Sept. 10, Erica Phelan will take her second 24-mile Coast to the Cure bike ride. Patrick Phelan will volunteer at a rest stop.
“NF Northeast is an amazing organization and we have met so many amazing people through them,” she said. “We have made friendships and connections to last a lifetime. After my husband and I learned about the organization, we vowed to do all we can to help raise money and awareness.”
The Coast for the Cure starts and ends in Gloucester at Stage Fort Park. Three routes are offered: a 24-mile, 66-mile and 100-mile. All pass through Manchester-by-the-sea, Beverly, Hamilton and Ipswich. The longest ride continues through Georgetown, Amesbury and Newburyport.
Almost 200 riders participated in last year’s event.
In preparation, Erica Phelan spends several hours cycling at the gym and completes a long bike ride each weekend. Matthew Phelan, who will meet his mom at the finish line, hopes to ride without training wheels next summer.
The family is also selling raffle tickets for $10 each. Matthew Phelan will pull a winning ticket each day throughout September, determining who will receive various gift cards and donated gift baskets.
In total, the family has raised $1,500 for this year’s event.
Matthew Phelan has a word of advice for his mom.
“Slow and steady wins the race, Mom,” he said.
Donations can be made at www.firstgiving.com/fundraiser/erica-phelan-machew/nf-coast-to-the-cure-2016.
Bridget Turcotte can be reached at [email protected]. Follow her on Twitter @BridgetTurcotte.