Malin Jackson is a sweet and energetic 6-year-old from Lynchburg, VA, where she lives with her parents, Alexander and Heidi, and three brothers: Callan, Sean and Finnian. In August 2021 Malin was diagnosed with a rare genetic cellular disorder called Nephropathic Cystinosis. Simply explained, every cell in Malin’s body retains an amino acid called “cystine” that crystallizes and causes damage to wherever the cell happens to be in the body. The crystals first appear and begin damaging the kidneys, thyroid and cornea in the eyes…and that’s one of the ways patients with cystinosis are diagnosed: their eyes look like starry nights. Because Malin was not diagnosed until after she turned 4, damage to her kidneys was already extensive, and she has clear crystals in her cornea. Due to thyroid disease and failure to thrive Malin was fitted with a gastrostomy tube in 2022 to help with medicines and nutrition, and in late 2022 Malin began exhibiting more external symptoms of kidney failure (namely chronic fatigue, ongoing anemia and nausea). In the Fall she was diagnosed with Stage 4 CKD and just before Christmas 2022 her doctors decided it was time to place her on the active transplant list. In addition to her first transplant, Malin will likely need a second transplant later in life as well as ongoing medications and possible interventions.

There is no cure for cystinosis, but there are a lot of medications to prevent further damage and extend the life expectancy of patients. Thanks to medicines, supplements, and nutrition around the clock, Malin is stable as she waits for her transplant, and her growth curve is slowly trending upward! Alexander and Heidi are very thankful for the overwhelming support of the pediatric departments at University of Virginia and their friends and family…and for their youngest son, Finnian, who also has cystinosis. In fact, he is the reason Malin’s was discovered: his symptoms became so severe in Summer 2021 that when treatment was sought, both children were able to be diagnosed and receive life-saving treatment. We are thankful that neither Malin nor Finnian have experienced any of the other physical effects of cystinosis, like rickets (bone damage), development delays, loss of vision, or muscular damage.

We are partnering with the Children’s Organ Transplant Association (COTA) to raise funds in honor of Malin Jackson. 100% of the donations raised will be available for a lifetime and COTA funds will assist with transplant-related expenses such as treatment, medications and diagnoses, travel to and from UVA…and possibly a second transplant! Thanks to all the support of our friends and family, we are confident that Malin will receive a wonderful kidney and that our family will continue to thrive. We are incredibly blessed and thankful to God for providing for every need and look forward to evidence of his work in Malin’s life for years to come. Thank you!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.