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News coverage for MTM: Michael Fayles

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  • pinksarah21
    Below is a news article that appeared in the Sun Chronicle, a Massachusetts newspaper. The more awareness we get for MTM/CNM the better. In addition to the
    Message 1 of 1 , Jul 23, 2006
      Below is a news article that appeared in the Sun Chronicle, a
      Massachusetts newspaper.
      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

      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
      Dystrophy Association.

      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
      muscle development.

      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
      daily routine.

      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,
      since 1990.

      `` 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
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