Charlotte Joy Norris

Charlotte Joy Norris

“Rare Disease Pioneer & Bohemian Baby”

Asheville, NC 10/29/2021-12/17/2023, Charlotte Joy Norris peacefully passed surrounded by her family on December 17th, 2023, at 12:46 am. Charlotte was born on October 29th, 2021, at Mission Hospital in Buncombe County NC.

Charlotte is proceeded in death by her maternal great grandfather; Jerry L. McColley, Jr. and paternal great grandparents Glen and Lillian Norris; and Ernest and Ollie Green.

Charlotte was the precious daughter of Kelsea McColley and Kyle Norris, and loving sister to her big brother, Carson Norris. Charlotte is survived by her maternal great grandmother; Joyce Rogers McColley, maternal grandparents; Scott and Melanie Windsor and her paternal grandparents; Jim and Linda Norris and her aunt; Cam Hollifield and uncle; Carter Hollifield.

Charlotte was a beautiful girl who lit up any room she entered with the sweetest smile and the most bright, big, sincere eyes. She had the gift of magnetism— anywhere she went strangers would stop and tell her how special she was. We loved doing whatever Charlotte wanted, including turning hospital beds and living rooms into toy stores, eating lollipops, drinking red juice, and staying up all night watching Sesame Street and Bluey on repeat. Charlotte loved playing with her brother and taking many fun trips with her family. She was a real-life hero, and displayed what real strength looks like. She was content in all situations, even when she was very sick. Charlotte had a bright spirit, and people frequently described her as being special, peaceful, and joyful. Charlotte was a pioneer.

Charlotte lived with a rare genetic disease; Acid Sphingomyelin Deficiency (ASMD). Through her medical journey she set the precedent by being the youngest child to have Enzyme Replacement Therapy for ASMD, and another experimental medicine. She created the medical protocol for all infants following her in the ASMD community.

She was strong in the face of all the medical procedures and challenges with her illness. Charlotte exuded bravery and grace in all situations. Charlotte was love. Pure love and joy, just like her name. Charlotte loved everyone and taught us to leave and love everyone better than you found them. Charlotte taught her family and friends how precious time is, and to put off inconsequential tasks and spend time with those you love. To be intentional and to always show up for those you love. Always. Charlotte will live on through those who love her, and they will continue her fight to end ASMD.

Charlotte will always be remembered for her sweet sounds, silly smiles, courage, cuddles, and all the love she so freely gave away.

Please join the family on January 5th, 2024, at the Wells Event and Reception Center in Waynesville, NC between the hours of 4-7pm to celebrate Charlotte’s life. Special guest speakers will begin at 5. Finger food and refreshments will be served. Please wear your pink along with pastels to honor our sweet girl.

The parents would like to say thank you to UNC Children’s Hospital in Chapel Hill NC; Mission Children’s, French Broad Pediatrics, and Four Seasons Hospice in Asheville NC for the continued medical support and care for Charlotte.

Also, a special thank you to Wylder Nation Foundation and the National Niemann-Pick Disease Foundation for their support and advocacy for children with this disease.

In lieu of flowers, donations can be made at Charlotte’s GoFundMe page: https://gofund.me/0cc186d7.

The care of Charlotte has been entrusted to Wells Funeral Home of Waynesville.