My name is Kaitlin Dillion, and I’m 24 years old. I was diagnosed with DC when I was 7/8. A couple of months later, at the NIH, I was diagnosed with Hoyeraal Hreidearsson Syndrome, a severe variant of DC. I was born 30 1/2 weeks premature. I had Moter and developmental delays (trouble walking, talking) and delayed swallowing. I was diagnosed with Dandy-Walker Cerebellar Malformation at age 2. My mom put me in birth to three services. I was hospitalized for severe Thrombocytopenia. and a whole body Petechial rash at around 6. I was hospitalized for repeated fevers and severe Aplastic Anemia, and I was transfusion dependent until my Bone Marrow Transplant at MSKCC in New York. I was diagnosed with non-alcoholic fatty liver disease after a biopsy.
After having low oxygen sats, I was diagnosed with PAVM in my left lung. I had a PAVM coiling procedure the following year. Unfortunately, the result of that procedure led to me having a seizure and the drainage of a brain abscess (a possible risk, we were told). Towards the end of high school, I started having a “cloudy” and “spacy” feeling. It got so bad that I couldn’t stay in school for more than a class period. After a couple of wrong diagnoses, after a year, we were led to the proper test and diagnosis, a buildup of Ammonia in my brain. (The second symptom of my failing Liver.) Around the same time, I was diagnosed with late-stage Avascular Necrosis of the right hip and early left hip. I was diagnosed with Pulmonary Fibrosis after an MRI. At the end of 2016, I was diagnosed with Cicatricial Alopecia. I started losing my hair slowly after my BMT after I was left with a coin-sized bald spot on the top of my head. Mid senior year, I began to have difficulty swallowing food. It felt like the food would get stuck before I could swallow. A month later, I had a barium swallow study. I was diagnosed with an Esophageal web. I received 13 esophageal dilations until my Liver Transplant at the end of 2019. My oxygen numbers plummeted a little after my liver transplant surgery, and I had fluid drained twice. I was on ECMO. I was in the hospital for 145 days, and then I went to a rehab hospital.