About Devin
Earlier Life of Devin
Devin seemed neuro-typical up through about 17 months of age. We have family videos of him smiling and saying Momma. He received the normal round of immunizations at 18 months of age. Within weeks he stopped talking and was crying a lot. From 18 months to about four years of age, Devin did not talk. A team of research doctors at St Louis Children’s Hospital conducted multiple tests, and ultimately determined he was the 13th person in the world to have ALPS. By the time they figured it out, his body had formed antibodies against itself and had attacked the brain, giving him autistic characteristics.
They started Devin on a large dose of steroids, until his double-negative-T cell counts balanced out, then lowered the dosage, ultimately to a level so low that other doctors didn’t believe it could possibly help, but it was able to keep things balanced.
Life of Devin before ITP
Devin began to speak within a few months of starting the steroid treatments. He was in speech, music, occupational, and physical-therapy, and needed a full-time classroom aide due to the autism. Over the course of several years he was able to manage middle school and high school without a classroom aide, though he still needed some workload and other modifications in his individual education plan.
Life of Devin After he suffered from ITP
Devin was 15 years old when he had ITP the first time in 2010. Strangely it happened within about a month of us moving from a suburb of Nashville, TN, to a farming community in Illinois near St Louis, MO. This sudden onset right after a move led us to believe that he was exposed to something environmental that triggered his ITP. Doctors disagreed with us and said that sometimes there is no known trigger.
Devin didn’t have another bout of ITP until seven years later, after he had graduated high school, and was working and taking classes at junior college. We thought Devin had another bout of ITP in 2018, but in fact his platelet counts never really returned to within the normal range, so it was more likely the same bout that he fought for about seven months.
Even during these times Devin was always smiling and willing to play games or watch movies. He had picked up singing, and was performing in front of crowds of up to 100 people. He was truly making the most of his life.
Devin had his final bout with ITP in early September 2019. This bout led to him being in the ICU for 10 days due to a massive brain hemorrhage. The doctors could not do the necessary brain surgery because he had an insufficient quantity of platelets, even after Rituxan and IVIG. After 24 infusions of platelets they attempted the surgery when he was at less than half the target level of platelets, but it was ultimately too late.