Poplar teen no longer tries to hide her muscular dystrophy
Makayla Erickson would like to go grocery shopping with her mom, but she’s afraid of what people might think.
“People always make comments — ‘Why are you doing that? What’s wrong with you?’ ” said Amy Erickson, Makayla’s mom. “It’s one of those things where you can’t physically see it, so it’s hard. They don’t understand, and that’s a huge part.”
The Ericksons live in Poplar, in a house in the country bound by trees. Makayla said she used to climb them when she was younger, but now she spends her summers mostly shuttered
inside — by doctors’ wishes — where the air conditioning keeps her cool. Muscular dystrophy leaves her susceptible to overheating.
“It’s just easier for me to be more relaxed and not worry about what I’m doing,” Makayla said. “When I was younger, I used to be outside all day.”
Muscular dystrophy is a group of genetic diseases in which muscle fibers are unusually susceptible to damage. These damaged muscles become progressively weaker, according to the Mayo Clinic, forcing many with the condition to eventually need to use a wheelchair. It’s a condition that groups like Minnesota’s firefighters are seeking to combat.
For years, Makayla said she felt isolated. She didn’t know anyone else with muscular dystrophy, and she concealed the diagnosis from her friends, who are fast runners, Makayla notes, and hard to keep up with during gym class at Northwestern Middle School.
“I tried to hide that I have muscular dystrophy, because I don’t really like being different,” she said.
That was until last summer, when Amy Erickson and her husband, Merrill, sent Makayla to Camp Courage in Maple Lake, Minn. The camp brings together kids with muscular dystrophy for a weeklong stay highlighted by zip-lining, horseback riding and an end-of-the-week dance.
“I never really met anyone who has the same thing that I have,” Makayla said. “Meeting all these people that are just like me and showing me that I’m not the only one in my world — that was a big thing for me.”
Makayla said her classmates at Northwestern often questioned why she missed so much school and why she frequently was whisked away to rest in the nurse’s office. She said she exhausted excuses covering up for her absences, and telling her friends she was simply tired wasn’t an option.
“When I came back (from camp), I told all of them the severity of my thing,” Makayla said. “They were all really understanding, which was huge. I thought nobody would understand what I have.”
Now, instead of racing past her during gym, Makayla’s friends slow down, or even stop, if they sense her getting fatigued.
“If I ever say I’m tired, it’s really weird because they get super nervous for me,” she said. “They say, ‘Are you OK? Do you need anything?’ It made it so much easier.”
Sharing the nature of her condition has been a relief, Makayla said. Still, she grapples with the disease and can’t be as active as she would like to be.
She loves going outside, she said, and is independent almost to a fault. In March, she broke her right foot and ankle while jumping rope. Muscular dystrophy puts her at greater risk of injury.
“Even with the crutches, I always carried my own stuff,” she said. “I always had it under my arm or had a backpack with me. I don’t think I always need help. I can do stuff myself.
“Recently, I’ve been taking it slower. I haven’t been pushing myself as hard. But I’m also doing my best to be as normal and look as normal as the other kids as I can.”
Before Makayla’s diagnosis, the Ericksons spent about six years trying to discover why she was small for her age and constantly tired. They cycled through a number of diagnoses before muscular dystrophy stuck. Those with major cases of the disease often are unable to walk and rarely live past 25.
In Makayla’s case, there’s no cure, her mother said. Makayla takes a steroid to limit the effects, and she visits the doctor a minimum of every three months.
Hospital bills pile up, Amy Erickson said, and having to miss work to drive Makayla to appointments is a blow to the family’s income.
Last month, Makayla was contacted by the Muscular Dystrophy Association about sharing her experience for a local fundraiser, the Duluth Fire Department’s Fill the Boot project.
A few days each summer, firefighters approach cars with a boot in hand, seeking donations from motorists that go toward researching the disease and helping families offset medical costs. Firefighters across the country have been filling boots for 60 years.
“It’s unbelievable how willing people are to donate,” said Dylan Hendrickson, a firefighter with the Duluth Fire Department. “People always say, ‘I wish I could give more.’ ”
The department also sends a team to Camp Courage each summer. The kids get a chance to talk with firefighters and see some of their equipment, including fire hoses, in action.
“It’s pretty amazing,” Hendrickson said of the camp. “It’s a whole different world.”
This year, Makayla said she took a moment to watch the smiles on kids’ faces as they passed by on horseback. She’s not a “horse lover,” she said, but that was OK.
“They actually got to do something that cool,” she said.
“It’s super weird that I had to lie to people all those years,” she said. “I could have just told them.”