Carters Story
Carter was born December 21, 2016. Since he was born we’ve always known he was a light, not only to his mother Ambers life, but to everybody else who enters his life. Two weeks after being born he got extremely ill and unfortunately that was the first of many hospitalizations. Recently, Carter just turned 5 years old and has had over ten hospitalizations, including procedures. In December of 2021 he caught COVID a few days before his 5th birthday. Due to complications, his Mother Amber brought Carter in to Phoenix Children’s Hospital in early January after many visits to doctors & many failed emergency room visits. His last stay changed his life. Not only did they find coccidioides (valley fever) masses across his lungs, they found his immune system was driving on flat tires. Carter was diagnosed with CTPS1 Deficiency on January 9, 2022. To others this may seem frightening, but to Carter & his mom this is what they’ve been fighting for the last 5 years. Countless days and nights, I watched his mom ridicule doctors advice & diagnosis’s, advocating for him to be sure Carters needs and worries were addressed. Five years is a long time for a child to have not a very “child like life”. But Carter, if you have the lucky chance of knowing him, is a bright, adventurous soul. With only smiles and laughs to give. He is a soldier and a very brave one at that. Once the valley fever clears up enough, Carter will start chemotherapy to get ready for a bone marrow transplant. With that being said, Carters immunologists goal for 2022 is simple, it’s Carter. CTPS1 is a rare genetic disease that has only effected less than 25 humans world wide. What does this mean for Carter? It means he’s getting the help his mom has fought for, for five years too long. He’s a miracle in the making. Until Carter gets his new immune system, he needs to be safe and away from large crowds of people. Amber is a hard working mom who has always provided the most for Carter, who never leaves his side at every hospitalization, who stays up and takes his vitals every night and every morning. She always tells me, just because Carters sick, doesn’t mean life stops, we just work harder to catch up. I have started this page to ensure Carter gets everything he may need medically to educationally. Our biggest hope is in twenty years, this will be just a part of his past.
Any help we can get Carter and his Mother, Amber; is extremely appreciative.
