Many Wellesley residents raise funds via walks, runs and cycling events, but resident Mona Maas’s inspiration for running the New York City Marathon on Nov. 3 really hits home. She’s training for the event and raising $3,500 for Boston Children’s Hospital with a focus on Hereditary Spastic Paraplegia, a rare adolescent-onset neuromuscular disorder that her son Joshua was with diagnosed with 2 years ago.
Maas is hosting a fundraiser on Saturday, Sept. 7 from 4-8pm at Natick Panera in the 9/27 plaza. Drop by and show a copy of the flyer below to ensure that proceeds from your purchase go to this cause. “My hope is that the money I raise for BCH will lead to advancements in neuroscience research and benefit all BCH families who need help,” Maas says.
Joshua has always been active, both in hockey and baseball, his first love. The Xaverian Brothers grad first showed signs of an odd gait at 15 after going through a 6 -inch growth spurt, Mona says. He was diagnosed at the age of 17 with HSP, a surprise since neither Mona, her husband nor other family members having any history of this or other neuromuscular or motor disorders.
“We have connected with a doctor at Cedar Sinai who has one other patient, a year older than Joshua, with the same genetic markers and symptomatology. He has connected with a group in Munich who think they may have another patient in the Middle East who has the same marker. We are hoping to find a patient match that is older in order to determine the prognosis,” Mona says.
Joshua’s body has piled the challenges on him. Not connected with the HSP, he was also diagnosed with retroverted hips (hip overgrows the socket, leading to impingement) at Children’s and has undergone surgery in each of the past 2 years on them.
The good news for Joshua is that his mobility has been improving, and he’s off to a good start as a freshman at Villanova University, which has been accommodating in terms of his room set-up and through other support. He’s studying computer science and statistics.
As for Mona, she started running in 2017, at the urging of her Wellesley friend and fellow runner Katherine Chan, to get healthier and as a way to relieve stress. She completed the Hartford Half in October, 2017, and has run 4 marathons since. Mona’s not going to win any medals for her speed, but she’s earning big rewards through her fundraising.
She’ll be outside Roche Bros. in Linden Square in Wellesley on Saturday, Sept. 7 to raise funds from 10:30am-1:30pm or so.
For more on Mona and Joshua, including Mona’s training diary, visit this BCH fundraising web page.