City recognizes survivors of rare disease
by Jennifer Cohron
Nov 25, 2011 | 4500 views | 0 0 comments | 19 19 recommendations | email to a friend | print
The Jasper City Council, below, recently proclaimed that Wednesday will be Juvenile Myositis Day. Photo special to the Eagle
The Jasper City Council, below, recently proclaimed that Wednesday will be Juvenile Myositis Day. Photo special to the Eagle
Susan Atkins took her 18-month-old granddaughter, Desi, to the dermatologist in May 2010 expecting a diagnosis of eczema.

Instead, the doctor walked in the room, patted her on the back and said, “I am so sorry. I wish I had better news for you.”

Desi, now 3, is one of the 17,000 children and young adults living with a rare autoimmune disease called Juvenile Myositis (JM).

It 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.

Desi endured infusions for eight months and had to be effectively quarantined last winter because they made her immune system so weak.

“Every time we would get in the car, she would say, ‘Get medicine,’ because we never went anywhere else except to the doctor and to get medicine,” Atkins said.

Although the infusions are over, Desi still takes weekly shots of a chemotherapy drug called Methotrexate. Syringes have become such a part of her life that she doesn’t cry at the shots anymore. She even helps her grandmother prepare them.

Desi’s family spent months searching for others who could identify with their struggle.

They were told not to get their hopes up, however, because the chance of being diagnosed is three in a million.

Yet six months after Desi’s diagnosis, 10-year-old Brylee Smith became the second Walker County child to find out that she had JM.

The two are now as close as sisters.

“We are so blessed because we have each other right here in town, but there are so many children across the country who don’t have that kind of support system,” Atkins said.

Although both families were initially devastated by their mutual diagnosis, Atkins and Brylee’s mother, Jennifer, are thankful for small acts of providence that led to it since JM is so rare.

For example, Atkins’ dermatologist was trained at Harvard and had seen the disease before.

Brylee’s pediatrician recognized her rash because he had read about JM in a medical journal just a week before her visit.

Jennifer Smith looked at her daughter shortly after doctors broke the news about JM to them on Nov. 30 and said, “God has picked us for something very, very special.”

They have spent the past year raising both local awareness of the disease and funds for the Cure JM Foundation.

According to the organization’s website, education is as important as money because some children will die due to a delayed or missed diagnosis.

Funding is also vital, however, because pharmaceutical companies are not motivated to develop treatments for a disease that affects such a small population.

The Atkins and Smith families now have their community’s support in working to rid the world of JM.

The Jasper City Council recently proclaimed that next Wednesday, the one-year anniversary of Brylee’s diagnosis, will be “Juvenile Myositis Day.”

Jennifer Smith said that although there is a National Myositis Awareness Day, Jasper residents are among the first to recognize its juvenile component.

Smith said her hope is that people will help spread the word about JM by joining the event on Facebook and recognizing Cure JM in their profile picture on Wednesday.

Scott Crump Toyota Scion also plans to host a “charity check-in” that day for Cure JM.

The 17,000 youth who are affected by JM are often told how rare they are.

However, Smith pointed out that their group is larger than Jasper’s population of approximately 14,000.

“Each one of us is important and we need a cure,” Smith said.