Months after passing away, Haywood child wins national award

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Months after passing away, Haywood child wins national award

Charlotte Joy Norris will receive the award on July 13 in Salt Lake City. File photo

Less than six months after her death at just over two years old, Charlotte Joy Norris is posthumously receiving an award for her courage in the face of a dire situation she wasn’t even old enough to understand.

Last week, Charlotte’s family — Haywood County natives now living in the Black Mountain area — announced that she will be awarded the National Niemann-Pick Disease Foundation’s Cora Sterling Endurance Award, to be presented in her memory at the NNPDF Family Conference in Salt Lake City on July 13. The award honors one person every year who has shined in raising awareness around the rare genealogical disease.

Charlotte was born on Oct. 29, 2021. For the first few months, everything seemed normal, but before long, it was clear to her parents that something was wrong, and subsequent testing determined that she had Neimann-Pick disease Type A, the most severe. Specifically, her diagnosis was ASMD, a genetic disorder that can cause organ failure at an extremely young age.

In late 2021, the FDA approved the use of Xenpozyme from Genzyme for both adult and pediatric patients with ASMD. After first trying another experimental compound in September, Charlotte began receiving that therapy in December 2022. A press release from the FDA noted that Xenpozyme received fast-track, breakthrough therapy and priority review designations. It also received orphan drug designation, which provides incentives to assist and encourage the development of drugs for rare diseases.

The treatment was designed not only to prolong patients such as Charlotte’s life, but to also improve their quality of life. It worked well for Charlotte until last year around September, when she began suffering allergic reactions. At first, she began to show some light discoloration on her face. Before long, she suffered a reaction bad enough that it required an EpiPen. On the doctor’s recommendation, they discontinued the infusions. At that point, it was only a matter of time before she developed a fatal illness or suffered organ failure.

Charlotte passed away on Sunday, Dec. 17, at 12:46 a.m. in her mother’s arms surrounded by family.

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While she never lived long enough to understand the impact her life would have, researchers have expressed tremendous gratitude for what she offered — advancement toward treatments that may one day save the lives of children in her situation. For that, she is being awarded the Cora Sterling Endurance Award.

The criteria for the award is that the nominees must be a diagnosed individual, sibling or friend under 25 who lives in the United States. According to the NNPDF website, nominees for the award “should display a special characteristic, strength, and poise, that exemplifies their own endurance in the Niemann-Pick journey and raises awareness of Niemann-Pick disease in the community on a small or large level.”

Charlotte’s father, Kyle Norris, talked about the importance of the award, highlighting that Charlotte is the first person with ASMD to win the honor.

“We are just honored that she is continually being recognized and forever memorialized for the work she did to advance the treatment of this disease and the lives of those who are affected by it,” he said in a written statement. “Charlotte’s life had real purpose, and we are grateful we continue to see that more and more every day. It’s been six months since she passed, and we never imagined life without her, but we are proud of her and her sacrifice.”

Kyle Norris has begun a GoFundMe campaign to pay for the travel expenses — expenses that have cropped up with relatively little notice — to get to Salt Lake City. Those interested can donate at gofundme.com/f/help-us-honor-charlotte-by-receiving-endurance-award?qid=4aa65646fcd7421607b956ba095e5e09.

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