WICKSBURG — Hayden Farmer wants to take singing lessons soon because a rare diagnosis has removed almost everything else a second-grader can participate in these days.
“She cannot participate in any contact sports. She’s had to quit gymnastics. She had to quit baton,” said Windy Farmer, Hayden’s mother. “If it’s outdoors, that’s another problem. Fanconi Anemia patients have a risk of cancer, so we have to make sure she has sunblock constantly. Finding things she can do is a challenge.”
What started as fever, abdominal pain and the occasional loss of consciousness in early May resulted in a life-altering diagnosis for the Farmers in August. And though Windy doesn’t “want to look at what the future’s gonna hold because it’s hard,” she, her husband, Scott, and Hayden have discovered gratitude through the Wicksburg and Dothan communities’ responses to their situation.
“We’re taking it day-by-day,” Windy said. “Right now we’re just thankful for the community that’s uniting to help us.”
Rare, tough diagnosis
Fancomi anemia is a DNA repair disorder, and only 31 babies are born with it in the United States in a given year, according to St. Jude Children’s Research Hospital. The disease limits the amount of blood cells a person makes, leaving deficiencies in platelets and white blood cells, among others.
Eventually, FA patients might develop leukemia or suffer other complications. While she has been clear of leukemia so far, Hayden suffers other symptoms.
“Day to day, she can get tired. She gets very irritable when she gets tired,” Windy said. “Also the emotional aspect of it: She feels like she’s losing all the fun. She feels like we’re taking away all of the fun stuff.”
Treatments involve blood transfusions and even bone marrow transplants when blood cell counts dictate, a timeframe that varies from one FA patient to another.
No cure exists for FA yet, but several organizations are investing in research to remedy that.
Despite some advances, the average life expectancy of someone with FA is between 20 and 30 years old, according to St. Jude. Some, however, live until their 50s.
Hayden’s treatment involves a network of local providers, some in Birmingham and some in Cincinnati — one of the research and treatment hubs for FA.
Hayden attends Wicksburg Elementary School, while Windy teaches math at the high school there. After hearing of Hayden’s diagnosis, Windy’s co-worker, Danna Hollis sprang into action, and organized a series of “Be the Match” drives.
The drives seek to increase the number of potential bone marrow donors, an important asset in the battle against several blood diseases, FA among them. Hollis said registering as a potential donor with Be the Match can be easy.
“All it is is a cheek swab — nothing like a flu or strep swab,” she said. “You mail off the swab in a prepaid package, and it takes six to eight weeks for (results) to come back.”
The drives occurred at Wicksburg High School during the day and once at a football game. All told, the school registered 175 kits and another 25 people picked up kits to mail off their swabs later — a number that shocked Be the Match officials, Hollis said.
“The registry is from 18 to 44 (years old). The doctors have found the recipient (of a bone marrow donation) has less rejection of the transfer in that age group, so that’s what they request,” she said. “We only had six or seven students that were 18 now. They were really pleased with our 200. It brought people out from everywhere.”
Hayden’s story has inspired other Be the Match drives.
One occurred at Windy’s sorority, Kappa Alpha Theta, ahead of the Western Carolina-Alabama football game last weekend. A friend of Windy’s has organized a drive in Trussville on Dec. 8, and at least three other groups are planning their own collections in the Wiregrass.
The efforts will likely help improve the likelihood of finding a donor match, which current sits at 1 in 430, Hollis said.
“You can’t be a match unless you’re tested,” Hollis said. “Our biggest thing is to get the word out there, get people aware of this.”
Until Hayden needs and receives a bone marrow transplant — or until researches find a cure for FA — the Farmers will find comfort in the area in which they live and in having each other.
“We are thankful of where we live,” Windy said. “We’ll take it little by little, enjoying what we can.”