Eight-year-old proves rare disease is merely a challenge to overcome

Eight-year-old proves rare disease is merely a challenge to overcome
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POSTED: Thursday, June 20, 2013 - 4:00am

UPDATED: Thursday, June 20, 2013 - 12:49pm

Mikayla Blunt knows she is not quite like everyone else. The Zachary-native has a bigger personality, and she is more controlling than her siblings and most of her peers.

She also has a severe form of a rare disease known as arthrogryposis multiplex congenita (AMC). But she said the only way she lets it affect her is, "that I get to swim different."

Her positive attitude hides the difficulty of living with AMC. It is a neuromuscular condition that caused her joints to harden in place. The most common variant is club foot. Some children are born with either their lower or upper body affected. Blunt's whole body is affected.

But to hear her family tell it, her swimming stroke is the only unique thing about her.

"She can do everything I can do," said her oldest sister, Brianna. "Some things she can do better than me. All she can't do is just go outside and walk. And she's learning to, with help."

The fourth annual National AMC Awareness Day is June 30. Blunt is one of a couple of children in the greater Baton Rouge area with AMC, and she said lots of people stare at her or say cruel things because they do not know what AMC is. Everyone in her family feels the sting of the mean comments.

"I wanna say something, but I just get over it," Brianna said. "There's always gonna be someone, somewhere, that has to stare, because they don't know. They just think it's so funny."

Because the local AMC community is so small, there will not be any events here for AMC Awareness Day. But everyone is encouraged to wear blue to show support.

There is no known cause for AMC, and no cure. It is not fatal, but it restricts quality of life. Many sufferers are able to improve their conditions, but that requires constant therapy and medical care.

"Therapy, splinting, stretching, casting, or surgeries to keep up what you can do, or try to improve where you are," Mykaila's mother, Lakisea Reichard, described.

Mykaila sees a physical and occupational therapist a couple times a week. She used to go to a doctor in New Orleans, but she now visits a specialist at Shriners Hospital for Children in Philadelphia, PA.

"In a year and a half that she's been going to him, she has improved tremendously," Reichard said.

Mykaila has learned to ride a custom-designed bicycle, and she can walk with use of a walker. Shriners accepts patients regardless of their ability to pay, and Miracle Flights covers their transportation every three months to Philadelphia, but the regular travel puts a strain on the family's finances.

Reichard used to be concerned about Mykaila's future, but she now believes the strength of her daughter's character will carry her.

"She's not gonna have any problems in life," Reichard said. "Those used to be one of my biggest concerns, would always be just, as a female, I think that, too: 'oh, my daughter's never gonna date, she's never gonna go to prom, she's never gonna have friends.' And she's so the opposite. There's no way she's not gonna do all that.

"She'll probably beat a guy up and be like, 'you're taking me to prom' or something. 'I'll run over you in the wheelchair.' Because that's how her personality is."

Even still, Mykaila is not immune to the stares of strangers and teasing at school. Reichard said her daughter will cry on occasion, but only for a moment. Then she uses them as motivation.

"She wants to be a doctor, to make casts for little kids that are like her," Reichard said. "And I believe, if she really tries, she can do it."

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