When we first introduced you to Shannie Carnline two years ago she was making decorative pens, which she sold to raise money for a special treatment for her Scleroderma, a rare autoimmune disease that causes the skin and soft tissues to harden and thicken.
First diagnosed with the juvenile version of the disease in 2008, Carnline had been through numerous treatments in an effort to control the illness.
"The treatments worked phenomenally, she responded beautifully and had a year and half of inactivity," said Shannie's mother, Julie Carnline.
But there is no cure for the disease and she'll likely have to live with it the rest of her life.
In the 5 years since her diagnosis, she's only met one other kid who has Scleroderma.
"It's very rare, there are between 5,000 and 7,000 kids in the country that have some form of Scleroderma," Julie Carnline said. "There are no organizations for their families, the kids or their caregivers. There's no way to connect these people together for any kind of support."
The Carnline family hopes to change that. They want to create a summer camp for kids with Scleroderma.
Shannie came up with the idea 2 years ago on the ride home from a treatment in Dallas.
This past January, her parents started a nonprofit organization, and are in the process of raising the money needed to buy the hill country land to start the camp.
"I wanted something like this my whole life," Shannie Carnline said. "I know other people must feel that way because I've always just been alone with my disease and everything but I have my family."
Shannie envisions a place filled with animals and lots of fun activities. Her mom sees it as a place where families can find a support network.
"We'd like to see it as a retreat for families to come out and spend time together and get to know each other, collaborate and then have a summer camp every year for the kids to come and get away from it all and be together, be with kids that know what they're going through," Julie Carnline said. "I think it's a fantastic idea, these kids somewhere to go."
On Sunday, June 9, the family will hold a BBQ fundraiser for the camp. The event will be held from 3-9 p.m. at the Encino Park Community Center located at 1923 Encino Rio.
For more information, click on these links: