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The courageous tale of Charlotte Joy: Rare genetic disease can’t stop one Haywood family and their daughter from helping other children

Charlotte Joy is a happy child, but fate has dealt her a seemingly cruel hand. Given her condition, she isn’t expected to live more than just a few years. Charlotte Joy is a happy child, but fate has dealt her a seemingly cruel hand. Given her condition, she isn’t expected to live more than just a few years. Helen Pace, CCP, photo

Her parents, Kyle Norris and Kelsea McColley, were thrilled when they found out Kelsea was pregnant. Both are Tuscola High School graduates. Kyle served in the Marine Corps from 2007 to 2015; Kelsea got her degree in psychology and is working on a masters. They are now engaged to be married.

Diagnosis and treatment

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Kyle wasn’t in on the Zoom meeting because he had a meeting with faculty at his son’s school. When Kelsea called him and broke the news, he drove over to his parents’ house. 

Charlotte’s specific diagnosis was Neimann-Pick disease type A.

The recycling bin fills up and overflows, and the cell malfunctions.

  from Genzyme for both adult and pediatric patients with ASMD. After first trying another experimental compound in September, Charlotte began receiving that therapy last December. A   noted that Xenpozyme received      and    designations. It also received    designation, which provides incentives to assist and encourage the development of drugs for rare diseases.

Along with possibly extending Charlotte’s life (Jalazo said researchers haven’t yet gathered that data), this treatment improves its quality.

24/7 care

Along the way, Kyle and Kelsea have become experts on ASMD, a condition many doctors haven’t even heard of and don’t understand. If Charlotte gets sick, they skip the emergency room and just drive to Chapel Hill. 

news charlotte joy and family

Charlotte, along with her brother, Carson, father, Kyle, and mother, Kelsea, have long been UNC fans, but now that she’s getting treated at the school’s children’s hospital, they love it more than ever. Donated photo

Charlotte also requires round-the-clock care. Even though there are nurses that can come to the house as needed, one parent pretty much always has to be home. While Kyle can work from their house, Kelsea doesn’t yet have the time to get a job in her chosen field of social work. Considering Charlotte has a compromised immune system, Kyle and Kelsea try to avoid situations where she may be around a lot of people, including larger family functions they’d regularly attended in the past.

A small but mighty community

“We learned so much in trying to care for Wylder that, it just would have been almost a disservice to just walk away from it,” Laffoon said.

Laffoon said fundraising is tough, but he and other affected families have had success finding significant money to put toward research, especially in more populous areas. Laffoon began fundraising by first reaching out to friends and family to get things off the ground. More recently, Wylder Nation has hosted events like fundraising galas and golf tournaments.

“It’s a marathon,” he said. “Where I get a little bit of joy, what keeps me going, is that I feel like the dialogue upon a diagnosis has changed … I think that alone, knowing that people are doing things focused on this disease can bring just a little bit of hope, and that in and of itself is pretty powerful medicine for mom and dad.”

The value of a life

“There are families that don’t have a champion on the clinical side like that,” he said. “She understands the urgency, that even though things might not be perfect, we know what happens if we do nothing. There are a lot of doctors that don’t do that.”

Courage and compassion

Jalazo said she’s often amazed by some of her patients’ parents.

“I am happy to support families in whichever direction they want to go after this terrible diagnosis,” she said.

While Kyle and Kelsea are cherishing their daughter’s precious moments in the face of a fatal condition, they also believe there is still time, still hope that a treatment might come along that can save her life. She’s now 18 months old, and the initial prognosis indicated she wouldn’t even make it that far. As long as Charlotte is alive and there’s a treatment worth trying, there’s hope.

“We think the treatment is doing some good already,” Kyle said. “The mission hasn’t changed, and that’s to try to save her life.”



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