Two local kids bringing awareness to rare disease
by Jennifer Cohron
Nov 30, 2012 | 3358 views | 0 0 comments | 14 14 recommendations | email to a friend | print
Today has been proclaimed to be Juvenile Myositis Day in Jasper. Last year, Jasper became the first city to ever recognize JM with an official day. Four-year-old Desi Atkins and 12-year-old v have both been diagnosed with the extremely rare disease. Photo by: Jennifer Cohron
Today has been proclaimed to be Juvenile Myositis Day in Jasper. Last year, Jasper became the first city to ever recognize JM with an official day. Four-year-old Desi Atkins and 12-year-old v have both been diagnosed with the extremely rare disease. Photo by: Jennifer Cohron
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The chance of a child being diagnosed with the rare autoimmune disorder known as juvenile myositis is three in a million.

Yet two children in Walker County’s population of approximately 66,000 not only have JM but were diagnosed within six months of each other in 2010.

By defying the odds, 4-year-old Desi Atkins and 12-year-old Brylee Smith have brought attention to JM at a local, state and national level.

“By us being in such a small, caring community, it has made a huge difference. If we had been in a big city, I think we would have gotten lost,” said Brylee’s mother, Jennifer.

Last year, Jasper became the first city ever to proclaim a Juvenile Myositis Day. Several other cities around the nation have since followed suit.

Earlier this month, Mayor Sonny Posey signed a proclamation stating that Nov. 30, the date of Brylee’s diagnosis, will always be celebrated as Juvenile Myositis Day in the city.

Supporters are encouraged to wear their Cure JM hats, T-shirts and bracelets and to change their profile picture on Facebook to something related to JM.

The months leading up to and following today have been equally important for raising awareness about the disease as well as funds to help find a cure.

In October, Brylee received the Hero Award at Cure JM’s annual national conference in Baltimore. Among other things, she was recognized for established her own nonprofit, Bry’s Art Rewards Kids (B.A.R.K.), which also earned her a meeting with and commendation from Gov. Robert Bentley in March 2011.

The second annual Cure JM Turkey Trot held in Jasper on Thanksgiving drew 94 participants, including several from outside the county.

Next month, Jeff Cook of the country music group Alabama and his wife, Lisa, will be hosting the Cure JM “Angels Among Us” dinner and benefit auction at their home, the Castle, in Fort Payne.

Several children and adults living with JM as well as family members of those who have passed away from the disease are expected to attend.

The gathering of JM survivors will be a far cry from the Atkins’ family’s experience when Desi was diagnosed when she was 18 months old.

The doctor broke the news to Desi’s grandmother, Susan Atkins, by saying, “I am so sorry to have to tell you this.”

“I almost fell in the floor because I was there by myself, she was just this little thing and he was telling me this awful news,” Atkins said.

Desi’s family began asking everyone they knew about this rare disease that it would take them two weeks to pronounce correctly. No one was familiar with it.

“When you call a doctor and he says, ‘I’ve never heard of it,’ that is what really scares you. Very few professionals know what it is unless they have dealt with it firsthand,” said Matthew Atkins, Desi’s father.

JM occurs when cells in the immune system damage body tissues by not turning off the inflammation process that is used to fight infections. Common symptoms of JM are weak muscles and a skin rash.

There is no cure, but JM can be managed through early and aggressive treatment.

Today, Desi is doing well. Although doctors are hesitant to say she is in remission, she is no longer on any medications and does not have to endure the monthly infusions that Brylee does.

She still has some pain as a result of arthritis that typically develops as a result of JM.

Her family also fights off panic every time a red spot appears on her skin. Any day could be the day that the disease flares.

However, they find comfort in the fact that they are not alone.

“You feel isolated when you have a very rare disease. You don’t know what direction to go, and you’re just depending on your doctor,” Susan Atkins said. “Now we know that we have a community that knows about it. Hopefully, this brings awareness so that if there is another child who comes down this, parents will follow up when they start seeing these strange symptoms knowing that it might be a sign of something serious.”

Close to the two year anniversary of Brylee’s devastating diagnosis, Jennifer Smith received a phone call from a woman in Huntsville who was recently told that her young son has JM.

The frightened mother shared the news with a friend from Jasper and was shocked to hear that someone else with JM lived just two hours away.

Smith was also reminded of how far her hometown has come in its recognition of JM during her recent campaign for Jasper City Council.

While she was going door-to-door, a local physician expressed the guilt he felt for not recognizing Brylee’s symptoms as JM.

“I looked at him and I said, ‘This is a rare disease. You shouldn’t have known what it was. But with what we’ve been through now, if another child walks in...’ And he said, ‘I will know.’ That’s what matters now,” Smith said.