By By BEN RAYMOND LODE / Niles Daily Star
NILES - Ballard Elementary third grader, Zach Hibbard, is just like other nine-year-olds, except he can't run as long and hard as most other children his age do.
Terri Hibbard, his mother, said Zach has CMT or Charcot-Marie-Tooth disease, a form of muscular dystrophy named after the three doctors who first described it.
Muscular dystrophy (MD), an inherited disease, weakens the muscles the body uses for movement.
According to the Muscular Dystrophy Association, CMT, which affects more than 115,000 Americans, and is a condition that affects legs, arms, feet and hands, is one of 43 forms of muscular dystrophy.
The biggest challenge for Zach, his mother said, is his legs.
She said when they get tired, they start to hurt and sometimes that causes him to trip and fall.
Apart from sports that involve a lot of running, however, Zach can do the things most other children do, she said.
CMT is not life-threatening or contagious, but it can worsen over time through continued weakening of the affected muscles.
A lot of research is currently being done to find out more about what causes muscular dystrophy in an effort to help those suffering from it, mainly children.
That is also why the Grand Rapids South Branch of the Muscular Dystrophy Association held one of its fundraisers at the Eagles Lodge in Niles on Thursday. They hoped their efforts would result in raising more money for research and also to help the many families experiencing great expenses while taking care of their children with MD.
Thursday's fundraiser aimed at raising $20,000.
One of the methods used by the association to raise funds is to challenge individuals in a community to raise $1,000 within a month or two of the actual fund raising day.
Those who haven't raised the total amount by the target date are picked up at their home and brought to the fundraiser location on the day of the fundraiser where they are provided with telephones and encouraged to call people to raise the money to reach their $1,000 goal.
However, she still hoped to reach the goal of $20,000 before the end of the day.
According to Earl, the association's main objective is to raise money for research, as well as to offer some support and resources to help families provide the best possible care for their children with muscular dystrophy.
Emphasis on the family is a priority since positive family support is a significant factor in helping children with muscular dystrophy maintain active and productive lives.
Terri Hibbard said money raised over the last five years has helped researchers make great progress in learning more about the condition.
She said doctors are learning an increasing amount about what causes muscular dystrophy and the things that can be done to stop it from progressing, or possibly even reversing it.
Hibbard, however, said as long as they can stop it from progressing, she is happy. She wants a bright future for her son.
Part of the money raised is also used to organize a summer camp for children with muscular dystrophy which is run largely by college volunteers in the medical field, Terri said.
Zach has gone to those camps twice.
In fact, when Terri drove Zach to last year's camp, held in Muskegon, he "kicked" her out of the cabin because he wanted to spend time with the other children there.
The Muscular Dystrophy Association cites these facts concerning the use of fund raising dollars:
– 76 percent of every dollar MDA spends goes directly to research, health care services and education; 17 per cent to fundraising and 7 per cent to administration.
– MDA provides $68.9 million a year for its health care services and professional and public health education programs.
– MDA provides some $30 million a year for research and funds some 400 projects worldwide.
– MDA maintains some 230 hospital-affiliated clinics including 26 MDA/ALS Centers.
– MDA clinics are staffed by teams of top health professionals skilled in the diagnosis and medical management of neuromuscular diseases. Services provided at MDA clinics may include: occupational therapy, selected diagnostic tests, genetic counseling, respiratory therapy and more.