The auditorium at Mountain Creek Middle School was full of cheering and whistling students on Nov. 28 as they gathered for a disability awareness event conducted by the Muscular Dystrophy Association (MDA).
The event was held on behalf of a student at the school, Amy Davidson, 14, who has been diagnosed with a form of muscular dystrophy called Charcot-Marie-Tooth disease. Both Amy and her sister attend Mountain Creek. The disorder weakens the peripheral nerves in a person’s extremities and causes their muscles to atrophy.
During the event, Jamey Wilbur, who is the health care service coordinator with the MDA, told the students that there are 43 different types of the disease but it’s something people are born with, not something you can catch. Describing its major symptom — that of muscle weakness — she said the event was designed to help students understand what it’s like to have muscular dystrophy.
The children were then divided up into four groups with each group participating in a different exercise at a station. After approximately 15 minutes, they moved to a different station.
One group tried out wheel chairs and walkers, including trying to open a heavy door from the wheelchair. “It’s hard to get outdoors when you don’t have anyone to help,” said Julie Chase, 13.
A second station invited students to mime a particular emotion to show the difficulty muscular dystrophy patients have in communicating when their hearing or speech is impaired.
A third station required students to walk over a stack of sleeping bags and pillows that demonstrated the difficulty muscular dystrophy patients have in keeping their balance with weakened leg muscles.
At the fourth station, students put on a shirt along with socks over their hands and were asked to button up the shirt. “I know most of this stuff,” said River Herman, 13. “But it was pretty hard to button a shirt with disabled hands.”
Amy’s mother, “Boo” Davidson said she asked the MDA to put on the event because she thought it would help students experience what it’s like living with muscular dystrophy. “It’s important to be sensitive if someone is not doing as well as you,” she said. “The kids will learn what it feels like to experience these things and develop empathy.”
As she watched how engaged the children were as they moved through the different stations, she beamed. “I’m really pleased with how it is run. I didn’t realize it would be all this. It’s better than I expected,” she said.
Wilbur said they offer these kinds of awareness events to all kinds of groups with the exercises tailored and customized to whatever the administrators feel the kids need to learn. She said often they are invited in because a child with a disability is being bullied at school.
Living with CMT
Davidson said Amy received her diagnosis of Charcot-Marie-Tooth (CMT) disease a year ago at the Neuromuscular Disease Clinic operated by the MDA. She said it is one of the most commonly inherited neurological disorders.
“The disease eats the muscle and kills the peripheral nerves,” she said. “And as the nerves die, the muscles wither. (Amy) can’t move her toes at all or flex her foot. But the braces she is wearing help. She’s been wearing those for three months now.”
Davidson said she had noticed something was wrong with Amy since the fourth grade because her daughter wanted to participate in cross-country and other sports but couldn’t because she was in so much pain. “She was falling all the time and her legs would get all cut up. She’d fall in the bathtub. Thank God for these braces. They hold her up,” Davidson said.
She encourages parents to look for symptoms of the disease which include a lack of normal reflexes, falling a lot, constant pain, and a loss of sensitivity in feet and fingertips. “There are a lot of people who have CMT but don’t know it,” she said.
Davidson said she was very thankful for UC Davis and the MDA. “They are wonderful down there,” she said. “If we are going on vacation and need a wheelchair, they deliver one to us anywhere we need it. I never cared about donating, but I will give to the MDA for the rest of my life.”
Amy Davidson said she has been teased at school about her disease, which was one reason for her mother’s request for the awareness event. She remembers when she first got her leg braces, three girls at school looked her up and down and then went off in a corner to laugh and talk about her.
But she’s also received a lot of support. “My friends have gotten closer to me and protective and understanding,” she said. “When I first got my leg braces, I thought they’d treat me differently, but they didn’t. They are more understanding. The students even elected me president of the school in October.”
At the end of the disability awareness event on Wednesday, Amy gave a short presentation that was greeted with loud cheers. Describing her disease, she said many people had asked about her braces. “They help me to walk better,” she said. She then went on to say she felt blessed to be around people who cared and who elected her as president of the school “no matter what the problem.”
Boo Davidson said that even with the disease, Amy can enjoy a normal lifespan.”I think the world is still hers,” she said. “She can make a difference if she has a happy heart and a happy spirit.”
Contact Dawn Hodson at 530-344-5071 or firstname.lastname@example.org. Follow @DHodsonMtDemo on Twitter.