Aaron McMillan was diagnosed with adrenal insufficiency at age 5. His 5-year vaccines mixed with the flu shot sent him into his first major adrenal crisis and to the hospital. Prior to diagnosis he had undiagnosed high fevers and a Mediterranean tan. It took three more months before he was also diagnosed with ALD.

Aaron’s fight started that day in November, seven years ago.  Luckily, he was paired with a local neurologist who had experience with leukodystrophy but an ALD expert also read his MRIs.  Aaron lives in Wichita, KS, and Aaron’s only local specialist is his endocrinologist.  His neurologist is in Kansas City and his metabolic-geneticist is in Omaha, NE.  He also has a team of specialists in Minneapolis, MN.

Aaron went to transplant shortly after his 11th birthday.  His neurologist had seen changes in Aaron’s brain stem that summer and sent he and his family to Minneapolis for further evaluation.  He was able to wait until November to precede to transplant.  He and his mom spent their winter in Minneapolis.  Aaron is now 365 + days post transplant.  He is still dealing with some minor issues but he’s learned that it is hard to regrow one’s immune system.

His parents started fighting for ALD to be added Kansas’ NBS in the early days of the fight and we are thankful for Kirstin Finn who has finished the fight for ALD to be added to NBS as it is effective as of the 1st of February.  His parents are thankful for organizations like Wichita’s Littlest Heros and the Ronald McDonald Houses.