Facing muscular dystrophy, eight-year-old speaks out about her disorder

Meg Lane/Staff Writer

Most of us could not imagine at the age of eight not being able to run like all the other kids. Halie Frahm, however has grown pretty immune to such a situation. Halie has congenital myopathy. In other words, a type of muscular dystrophy which makes her muscles not work like they are supposed to.

Halie is the daughter of CFHS resource teacher Tammy Frahm. She was diagnosed with her form of muscular dystrophy when she was a year old, but Halie Frahm said, “I didn’t understand I had a muscle problems until I was older.”

Having a form of muscular dystrophy has had it’s ups and downs.

“I hate needles. Many of the tests have needles in them. Needles are my enemy. I wish I could get up off the floor easier and run as fast as my friends,” Halie Frahm said. “In P.E. I use a scooter with a seat. Sometimes I have to sit out during some activities with a lot of running; otherwise, my school day is the same as everyone else’s.”

Mrs. Frahm also said, “I feel blessed that I have Halie as a daughter. She has taught us how to persevere, adapt and accept everyone for who they are inside.”

Both Halie and Mrs. Frahm expressed that any child with a disability despite any circumstance is still normal.

“Kids that have disabilities are like everyone else. Their hearts beat on the inside just like you and me,” Mrs. Frahm said.

Now there is no treatment for Muscular Dystrophy, but the Frahm’s have hope that some day there might be.

“As a family, we are always interested in new research related to muscle disorders. Hopefully, through our connection with the Muscular Dystrophy Association and participation in research studies, they will find a cure for Halie’s muscle disorder in the future,” Mrs. Frahm said. “Research will save lives.”

The Frahm’s have to travel to Iowa City yearly for physical therapy, orthopedic issues and any muscle weakness Halie might have. Doing this may sound frustrating, but Mrs.Frahm said, “Visiting physicians is not difficult; it almost becomes a part of your routine. As a parent you want to make sure your child receives the best care as possible to stay healthy.”

Throughout all of this, Mrs. Frahm noted that raising Halie is not that hard.

“Halie is a humorous, energetic and strong, young girl. She is easy to parent because she is very wise and mature beyond her age,” Mrs. Frahm said.

Maturity that has opened up doors now for Frahm to speak out about her condition.

With a gift for gabbing, Frahm was very excited to hear that she had become Black Hawk County’s MDA Ambassador. This gave her the chance to educate others about what Muscular Dystrophy is and get involved in the community.

Events such as Ride and Strides, the Shamrock fundraiser and the MDA telethon have helped Halie Frahm to achieve that goal.

“I have met many people involved with the Muscular Dystrophy Association. I have also met others that have muscular dystrophy. I can’t wait for the MDA camp this summer to meet other girls like me. It’s not all work and no play. At camp they have huge water fights,” Halie Frahm said.

Mrs. Frahm said, “I have seen Halie’s joy of speaking and meeting new people grow and expand since becoming an ambassador. Halie is very aware of her muscle disorder, and she has become her best advocate.”