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Fund-raising event spreads word on Kirkland girl’s rare disease
The 5-year-old walked into the Asian Resource Center wearing a flowery dress and, laughing, chased after her younger brother. The event was the Jump and Jive 2 Cure JM, held Oct. 4. The youngsters attended with their parents, Doug and Jeanette Weaver of Kirkland.
Grace is one of approximately 5,000 children affected by Juvenile Dermatomyositis (JDM) in the nation. The event was a benefit for the Cure JM Foundation, which was established five years ago to spread awareness about this orphan disease and to raise money for its research. An orphan disease refers to a disease where there are less than 200,000 known active cases in the U.S, according to health officials.
JDM is one of the most common forms of Juvenile Myositis (JM), a rare autoimmune disease. Grace’s mother explained the disease as an irregularity in the child’s immune system when the system overreacts and begins to damage the skin and muscles. Grace was diagnosed with JDM last April, yet the signs that led up to the disease were not necessarily blatant.
In December 2006, Grace caught a bad cold and though it eventually cleared up, she was left with what Weaver called a “smoker’s cough.” “Pediatricians tell you it’s not unusual in children for a cough to last a couple of months, so don’t get too upset about it,” she said. The “smoker’s cough,” however, did not go away until it was treated with high-dose steroids in July 2007. This would be the first sign.
The second sign would be that Grace began falling at the beginning of June. Weaver described these as “really significant falls” where Grace would be walking down the sidewalk and fall almost completely on her face. “At that time it was happening once a week,” said Weaver. “By the time of diagnosis it was happening multiple times in a day.” The coughing and falling were indications that only in hindsight did her parents realize something was really wrong.
Weaver explained that the first sign she and her husband clued into was the rash that appeared on their daughter’s face. In April 2007, Grace got a rash that was a butterfly shape. A skin rash is a classic symptom of JDM that can appear at any time of muscle weakness and sometimes can be very faint. Grace’s rash was shocking because it appeared suddenly and there was no break in the skin. “It looked like a sunburn, but it was symmetrical on both sides,” Weaver added.
Today Grace’s life is filled with daily doses of medications and monthly visits to Seattle Children’s Hospital for infusions. Weaver said that the infusion day can last between nine and 12 hours. “We usually leave our house before 8 a.m.,” she said. “I take what I call the brave bag, which is stocked with her virtual reality glasses that she needs to get through the anxiety and trauma associated with a port access.”
From doing a vein access by IV for the first six months, Grace’s arms and hands became incredibly scarred and now she has a portacath, which is a catheter that has been surgically implanted under the skin to allow easy access to her veins.
“It’s easy to get the access but the bad thing is that it’s very traumatic to have a 2-inch stake go through your chest wall when you’re a child,” said Weaver. She found the virtual reality glasses to be helpful in aiding Grace to get through the infusions better.
“I like the movie part,” Grace said. With glasses on and earbuds in place, she is able to watch a movie with most other sensory perceptions significantly minimized.
Grace is in kindergarten at the Christian International School in Bellevue. She said her favorite subject is math and that she likes to play ball and make dirty sandcastles with her brother Richie. “She’s a protective big sister,” said Weaver. “She is for the most part very outgoing, self-possessed, happy, charming.”
Although she loves horses, Grace cannot ride them because the prednisone that she takes causes significant bone loss and she cannot take the risk of falling off a horse and having her spinal bones crush.
At Saturday’s event Grace danced happily with other children to the kid-friendly beats of band Recess Monkey. “We really wanted to be here to help the cause and get the word out [about JM],” said band member Daron Henry.
Everyone who attended were there for the same reasons. “I’m just a parent, my daughter has JM,” said event coordinator Suzanne Edison. “I wanted to raise money for [Cure JM foundation] because they have been incredibly supportive to families across the country.”
Dr. Kirsten Hayward, a fellow in pediatric rheumatology, was at the event to accept an award on behalf of the rheumatology department at Seattle Children’s Hospital. She said that aside from an unknown disease such as JM not getting a lot of funding, another problem is that once a child is diagnosed, it is difficult to know how to proceed. “Some kids do really well and some kids have it the rest of their lives,” said Hayward.
Grace seems to have been improving, her mother said, but she now has pneumatosis in the last third of her colon, so she and her family may go to Chicago to see the pre-eminent expert in the disease. They have already had to make this trip before.
It is extremely aggravating as a parent that there is no standardization for treatment, said Weaver. “There are no known protocols for diagnosis or for treatment, so every doctor is just doing their best to create a treatment.”
Over $13,000 was raised at Saturday’s event while donations continue to come in, according to Edison. Each dollar is one step closer to tackling this rare disease.
To learn more about the Cure JM Foundation or how to make a donation, go to www.curejm.com
Kristin Okinaka is a student in the University of Washington Department of Communication News Laboratory.