Nov. 15, 2013 — -- While most kids end up at camp during the summer, canoeing and rock climbing during the warmest months of the year, the campers of Camp Painless But Hopeful, which kicks off Friday, have to wait until there is a chill in the air before packing up and heading to the lake.
That is because the kids who attend Camp Painless but Hopeful all suffer from an extremely rare genetic disorder called congenital insensitivity to pain with anhidrosis (CIPA). The disorder disrupts signals sent in the nervous system and results in both the inability to feel pain and to sweat, which makes people with CIPA extremely vulnerable to becoming overheated.
The camp was founded by Tara Blocker, whose teenage daughter Ashlyn suffers from CIPA.
"She's been wanting to pack for the last month," said Blocker of Ashlyn. "She's definitely ready to go."
Blocker was inspired to start the camp, based in rural Georgia, after her daughter told her about a dream she had of going to a camp with other kids like her.
"It was a very, very vivid dream," said Blocker. "I was floored. I said 'O.K., let's do it.' From that point on, it was my mission to make her dream come true."
Tara Blocker and her husband, John, had met in person only one other family with a child who had CIPA, before starting the camp. In fact when Ashlyn was first diagnosed, Blocker said she became despondent because even online she couldn't find other families who had children with the disorder.
It wasn't until the family went to the press with their story, when Ashlyn was a toddler, that they started to hear from other families. Although the Blockers were featured on multiple television shows and in newspapers, they were still usually contacted by other families in similar situations online or over the phone.
When the camp first started in 2011, it was the first time Tara Blocker was able to meet families she had been corresponding with in person.
"To know there are other people out there walking in your shoes every day, to come in contact with them every day [during camp] is a special experience," said Blocker.
The first year of the camp there were 11 campers, who came with their families, this year there will be 15 families for a total of 56 people. The 15 campers range in age from 4 to 17.
While 15 campers may not seem like a lot, it is a huge number for people with CIPA. The genetic mutation is incredibly rare, and there is little information on how many people are afflicted worldwide. Experts say they estimate about 50 to 100 families could carry the mutation worldwide. The disease often results in patients' accidentally self-mutilating because they don't feel the pain that might stop them from scratching their skin raw or biting through their tongue when teething.
Blocker said one key part of the camp is making time for parents to swap stories and advice about how to safely raise their children.
"We're able to talk about things that happen throughout the year. There's such a huge sense of comfort [discussing] things that have worked and things that don't work," said Blocker.
Ashlyn at age 14 is one of the older campers, and Tara Blocker said one key bit of information they have passed along was how important regular eye check-ups are for children with CIPA. As an 8-month-old, Ashlyn had a severe corneal abrasion that doctors had no idea occurred until they caught it during a routine eye visit.
"We're able to pass that information along [to other parents]," said Blocker. "That's something you rely on pain to tell you that 'my eyes are hurting.' They don't have that luxury."
The day-to-day schedule of Camp Painless But Hopeful, which is held at a campsite designed for sick children, features plenty of activities from zip lining to canoeing and crafts. Although there is a medical lodge onsite, Blocker said the goal for the three-day long camp is to have as normal an experience as possible without excluding kids from activities just because they could possibly get hurt.
"Several of the parents are registered nurses so we are covered," said Blocker, who points out that the camper's parents will be the most familiar with keeping them safe anyway.
Blocker said founding the camp and running it for two years has been a great experience, but she says she will be happy to hand off duties eventually.
"Ashlyn said she wants to take my job as camp director [when she's older], and that's just fine," said Blocker.
When the family first drove to the site, Blockers said she remembered watching Ashlyn from her side-view mirror, looking for her reaction. As they entered the camp site, Ashlyn gasped, "This is exactly what my dream looks like!"