News coverage for MTM: Michael Fayles
- Below is a news article that appeared in the Sun Chronicle, a
The more awareness we get for MTM/CNM the better. In addition to the
news article, it says that the family is appearing on the Labor Day
weekend MDA telethon, which I think is great to see the MDA giving
MTM some coverage.
Here is the website link (but I have posted the whole article
Family's compelling story to get national attention
BY MICHAEL GELBWASSER/SUN CHRONICLE STAFF
MANSFIELD -- Mansfield High School freshman Michael Fayles Jr.
recently welcomed his father, a Marine, home from Iraq, where he
injured his neck during a roadside explosion.
At the same time, Fayles, 14, is fighting his own war with a disease
that leaves his muscle fiber hollow, preventing him from, among
other things, standing on his own.
The Fayles' stories recently caught the attention of the Muscular
As a result, the Jerry Lewis Telethon this Sept. 3-4 will feature
Fayles and his mother, Kathleen, among others.
But the Fayleses hope that the millions of telethon viewers
worldwide understand that supporting Muscular Dystrophy research far
transcends helping Michael.
`` It's not just his story. It's all the stories,'' Michael Sr. said
Friday during an interview at the family's North Street home.
The Fayles will appear on the telethon from the WVCB-TV (Channel 5)
studios in Needham.
Michael Jr. has myotubular myopathy, one of a group of diseases that
cause problems with the tone and contraction of skeletal muscles.
The most common form, known as X-linked, is caused by defects or
deficiencies of myotubularin, a protein thought to promote normal
He was only a couple of days old when he was diagnosed, Kathleen
`` It was devastating, for your first born to have something like
that,'' she said.
Due to his muscle deficiency, Michael needs help with much of his
However, he loves to read.
`` It amazes me how smart he is,'' Kathleen said. `` He just read
the Da Vinci Code. He read it in one day.''
Michael Jr. gets around in an electric wheelchair that the Muscular
Dystrophy Association helped fund about four years ago.
`` He tries to be very, very independent and do what he can do for
himself,'' Kathleen said.
Meanwhile, Michael Sr. has been activated three times by his
infantry division, the 1st Battalion, 25th Marines, based in the
Devens Reserve Forces Training Area in north-central Massachusetts,
`` It's tough. Unfortunately, I have a job to do,'' Michael Sr. said.
`` It's hard being away from the kids, being away from Kathleen.''
The unit was last activated on Dec. 1 and sent to Fallujah.
Kathleen took care of the Fayles' sons, Michael Jr. and Brendan, 9.
`` You do what you have to do. You get up in the morning and do it.
It didn't stop because he was gone,'' Kathleen said.
However, Michael Sr. suffered a painful pinched neck nerve injury
after an improvised explosive device exploded during a roadside
Michael Sr. was sent home, initially to the West Coast and then to
the Walter Reed Army Medical Center near Washington, D.C.
Now he is home, awaiting surgery in New England.
`` I can't lift anything over 10 pounds,'' said Michael Sr., who has
been a Marine for 22 years.
The Muscular Dystrophy Association invited the Fayleses to appear on
the telethon because the tales of both father and son are compelling.
`` This is a story of how Michael (Jr.) has one of the diseases that
the MDA covers, but it's also the story of what's going on right
now,'' MDA Health Care Services Coordinator Mary Leeman said.
`` Parents are in war countries. It seems really relevant at this