May 28, 2016 11:05 PM
Hundreds ride to benefit Alia Grace
NASHUA - Loud rumbles and engines could be heard as 200 motorcycles left the Best Cycle Ford in Nashua Saturday, embarking on a 90-mile charity ride for a special little girl with a very rare illness.
"Fun loving, happy, runs around, just a good kid" said Spyros Sauyer of his friend's daughter 3-year-old Alia Grace who, back in April, started to feel sick.
"They took her to the hospital. They did some testing, and came back to find out she has a rare disease called MLD," said Sauyer.
MLD, also known as Metachromatic Leukodystrophy, is a debilitating disease that affects the nervous system. The disease is so rare there has been only 160,000 cases reported worldwide and Alia has been the only reported case in New Hampshire. Overtime, she will lose awareness of her surroundings and become unresponsive.
"It's been a mad rush of doctors and tests," said Spyros.
Alia is part of a program to help find a bone marrow donor. MLD is incurable but, if they find a match, it could help to stop its progression. Sauyer reached out to his motorcycle club the Freedom Cruisers. Alia's dad is the chapter's president.
"We just felt like it was the right thing to do," said friend Mark Boisbert. "We need to bring awareness to this disease."