Real-time N.H. traffic updates

May 28, 2016 11:05 PM

Hundreds ride to benefit Alia Grace

NH1.com

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."

The event included a silent auction, a raffle, and raised more than $3,000 dollars to help the family. Friends say there will be additional fundraisers and a gofundme-account has been created.

--  Dealing with the Disease of Addiction? Click here for help --

--

»Comments

Concord, NH
Broken Clouds 33°
12am 33°
1am 33°
2am 33°
3am 36°

 

N.H. DollarSaver

 

Friday, TBD - Health care bill pulled from House floor

Friday, 4:15 p.m. - Weather update with Meteorologist Ryan Breton

 

 

NH1 on Facebook

Download NH1 App

NH1 on Twitter

Check out NH1 News Rail Polls on LockerDome on LockerDome