Caleb Robert MacKay, age nine, died on Saturday, January 9, 2021 at Moses Cone Memorial Hospital, surrounded by his family. His body finally succumbed to a years-long battle with an extremely rare neurodegenerative disorder caused by a mutation in the IRF2BPL gene. Caleb was adored by his family and made a deep impression on everyone he met during his short life. He had a gentle soul, kind heart, and the sweetest disposition. He took joy in laughing at his siblings and his daddy, watching his favorite shows, and snuggling his mommy. He found freedom and comfort in the water and especially enjoyed his regular swim sessions with Swim Fanatics and swimming in the water at the lake. Caleb loved going to Disney with his family, where he was treated like royalty by Mickey and the other characters. His other favorite pastimes through the years included baseball with the High Point Miracle League, soccer at TOPSoccer, horseback riding with HorseFriends, and summer speech camp at Camp REACH. Caleb’s fighting spirit, in the face of his numerous medical challenges, was an inspiration to all who knew and loved him. He will be deeply missed by his family, friends, teachers, and caregivers and his legacy will live on in their hearts. The family would like to thank Caleb’s teachers, aides, therapists, classmates, and friends at Gateway Education Center and beyond. The Gateway family has always looked out for each other and fought hard for our school and community. The family is also grateful to Cone’s Pediatric Complex Care Clinic and our at-home nursing team for the quality care provided to enable Caleb to live as comfortably as possible at home, and to the Undiagnosed Disease Network (UDN) site at Duke University for their tireless quest to find answers related to Caleb’s unique disease. Finally, the family would like to thank Caleb’s home caregiver, Erin Wesoly, for loving him with all her heart and treating him like her own family. Caleb is survived by his parents, Cassidy and Todd MacKay, older sister, Lilly, and younger brother, Austin. He is also survived by grandparents Caroline Murray of Reidsville and Barbara Mackay Vinson and Bill Vinson of Greensboro; great- grandmother Lora Tuttle of Birmingham, Alabama; and numerous aunts, uncles and cousins near and far. Caleb is preceded in death by grandfathers, Frederick (Rick) Murray and Robert (Bob) MacKay. The family will hold a private service at their home with Reverend Drew McIntyre of Grace United Methodist Church presiding. A larger memorial service will be planned once Covid-restrictions allow for a safe gathering. Citty Funeral Home is in charge of arrangements. Online condolences may be sent to: www.cittyfh.com. In lieu of flowers, please consider making a donation to the Cone Health Pediatric Complex Care Program Fund (via check to Cone Health Philanthropy at 1200 N. Elm Street, Greensboro, NC 27401 or online at https://www.conehealth.com/giving/ways-to- give/womens-and-childrens-giving/womens-and-childrens-giving-form/ ); the Stand by Eli Foundation for research into IRF2BPL (standbyeli.org); the Gateway Education Center (via check to 3205 Wendover Ave E, Greensboro, NC 27405); or any of the amazing organizations mentioned above.
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