It’s ‘Quite a journey…’

By on June 1, 2011

By: WENDY KOMANCHECK Review Correspondent, Staff Writer



Little Avalon Seibel, who suffers from Juvenile Dermatomyositis, is resting her hopes for a good fund-raiser on the local appeal of whoopie pies. (Photo by Preston Whitcraft)Little Avalon Seibel, who suffers from Juvenile Dermatomyositis, is resting her hopes for a good fund-raiser on the local appeal of whoopie pies. (Photo by Preston Whitcraft)

Imagine watching your child gradually go from healthy and happy to developing a rash on their face, losing muscle coordination, and eventually becoming confined to a wheelchair, or worse, hospitalized.

And, if your child was in a lot of pain, in addition to the rash and muscle weakness, what would you do?

Such is the world for children with Juvenile Dermatomyositis (JDM) and their families. JDM is an autoimmune disease where the body starts attacking its tissues. Symptoms usually start with a rash on the face that moves down the body, to sufferers eventually losing muscle coordination. Many times, steroids and other medications help to put the disease into remission. Yet, at this time, there isn’t a cure for JDM.

A few years ago, Jon and Katie Seibel of Akron watched their daughter Avalon go from being a healthy youngster to developing the JDM rash. As time went on, Avalon needed a wheelchair and received homebound education from Akron Elementary School.

"Before she was diagnosed, (Avalon) was in a lot of pain. She would fall at school because her legs would just give out. She ended up being in a wheelchair at school. It ended up being too much for her, so she started homebound, where her teacher would come to the house two times a week to tutor her," explains Avalon’s mother, Katie Seibel. "Depending on how she felt on particular days, sometimes, she would go in (to school) for an hour or so. We had to carry her up and down the steps. She could not lift her head on her own from a lying down position."

To help her get stronger, Avalon received physical therapy two times a week to help treat the muscle weakness caused by JDM. And at the beginning of her treatment, Avalon took two different medications to control the disease. Now, she takes a maintenance drug injection once a week and is periodically monitored at Hershey Medical Center.

"Living with JDM is quite a journey," Seibel explains. "She will always have the disease. She could have a relapse when she’s 10, when’s she 15, when she’s 25. We just don’t know – although, we pray everyday that she doesn’t have one.

"It took quite a toll on our family of seven. Trying to juggle everyone’s schedules with school and doctors’ appointments, etc. and making sure everyone had what they needed. And knowing that we had to give more of our attention to Avalon was hard on the other kids. We had lots of talks trying to explain to them what was going on. But they were very helpful and understanding. It actually made us closer as a family."

On Saturday, June 11, from 7 a.m. to 1 p.m., rain or shine, the Seibels will be hosting their second fund-raiser to raise money for "Cure JDM" at the Pancake Farm. They will be selling whoopie pies from Hershey Farm Restaurant in Bird-in-Hand, which were voted as the top in Lancaster County. From 9 a.m. to 1 p.m., there will also be face painting and manicures. Face painting will be for $1, and manicures are done by donation. Seibel recommends that you come with naked nails since Avalon and her sister will only be painting them and will not be using any fingernail polish remover.

The whoopie pies will be selling for $2 and are available in chocolate, chocolate with peanut butter filling, pumpkin, and red velvet.

"And they are huge," says Seibel. "Not your normal size whoopie pie!"

Families afflicted with JDM are hoping for a cure. Avalon and her family are hoping to raise at least $4,000 to give to Cure JDM to end this unpredictable childhood disease. To learn more about Cure JDM, go to their Web site, curejm.com/info/research.htm. More SEIBEL, page A17

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