For Alicia Weeks, mother of three, the task of a 20-mile hike up Hanging Rock needs to be put into perspective. Weeks’ 18-year-old daughter Taylor has cystic fibrosis, a disorder that necessitates a daily routine with all of the unpleasantness of such a hike without the benefits.
“She’s climbing mountains every single day. I want to show I love her and raise awareness,” Weeks said.
Weeks will participate in the Xtreme Hike event put on by the Carolinas Chapter of the Cystic Fibrosis Foundation on Oct. 18, one for which she had to raise $2,500 to participate.
“I’m really proud of them for doing it, it really makes me happy. I’m so glad she’s been able to raise the money she’s raised,” Taylor said. “I’m really grateful to have them support me and do stuff like this.”
Taylor is one of three of Alicia’s Weeks’ daughters; the other two – Maegan, 20, and Carly, 18 – are healthy. But unbeknownst to Alicia, both she and her husband carried the Cystic Fibrosis gene, a requirement to have a child with the disorder. The community college student taking classes to get into a medical stenography program lives mostly a normal life that includes a host of short-term inconveniences – she notes some days are better than others – and potential medical complications down the road.
Taylor was diagnosed at four weeks, and though she looks like any other girl healthy girl, cystic fibrosis causes a variety of health problems. Initially, she was in the hospital for two-and-a-half weeks, and underwent two sinus surgeries.
“It’s a disease that’s going on on the inside,” Alicia Weeks said. “Just to maintain a daily regimen, she has to do hours of therapy. Instead of doing things other kids like to do, she’s hooked up to a machine,” Weeks said.
The genetic disorder primarily affects the lungs. Buildup of mucus causes breathing problems and needs to be cleared out twice daily. As a child that consisted of two half-hour sessions of what the family termed “love pats,” and now she has a special vest that helps constrict her chest and force the material out.
The condition, caused by a mutation of a gene responsible for making a protein required to regulate sweat, digestive fluids, and mucus, also leaves her unable to digest food without a daily regimen of enzyme-containing medicine. Other complications such as kidney problems can arise from the respiratory and digestive issues; on one occasion Weeks said her daughter missed a whole month of school.
For Taylor, the condition represents a nuisance and a threat, but also, in a sense, normalcy. It’s all she knows.
“I’ve had it all my life so it’s just something I live with and have come to accept and it’s part of who I am,” she said. “I’ve never not had to take medicine every time I eat.”
Research into the disease has proven critical, as treatments have come a long way in recent decades, though the many health complications of the disease still pose substantial risks. According to the Cystic Fibrosis Foundation, in the 1950s children with the disorder were not expected to live to start elementary school. Now, according to the most recent Patient Registry data the median predicted age of survival is in the early 40s, the foundation said.
Taylor doesn’t worry about the numbers.
“Statistics, I don’t look at them too much, it can be different for everyone so I really don’t see the point,” Taylor said. “I’m pretty blessed, I’m pretty healthy. Sometimes I’ll be short of breath, but not too badly.”
Taylor’s sister Maegan will join their mother on the hike. While the two didn’t think they could each raise $2,500 needed to hike, Maegan volunteered to be a trail lead for the organization.
“We pray that in Taylor’s lifetime we will have a cure,” Alicia said.