Remembering Alexander Jamie Black
Gene: Unknown

Alexander Jamie Black is a warrior. He is an amazing husband and father of 6 children. In 2016, when his youngest was only 12 months old, he was diagnosed with Aplastic Anemia. He became transfusion dependent and his life changed forever. He always kept positive about his treatment and wanted to support others in their recovery. He was a big advocate for Be The Match and Red Cross blood donation. After extensive treatment his health stabilized for a few years. During this time, testing was done and he was found to have abnormally short Telomeres. He enrolled in studies and saw multiple specialists. He said many times that if the right treatment wasn’t available for him, participating in the studies would still be worth it if it could improve future treatments. This was a big concern after testing our children. We were lucky enough to be introduced to team telomere. Team Telomere was a huge support during his fight with Very Severe Aplastic Anemia. They provided resources, knowledge, connection with others who were going through the same thing, and most of all they let us know how much they cared for our family. Knowing we weren’t alone was such a blessing. In 2020 he relapsed and after years of waiting he was able to receive a bone marrow transplant in February 2021. Due to the unique combination of other health challenges, transplant was not going to be simple. He went into transplant knowing he was high risk but knew it was his only option. He was positive during his entire battle. He never complained even when he felt terrible. Unfortunately during transplant he had major complications such as kidney failure, a very invasive fungal infection, blood infections, fluid around his heart, and ultimately his transplant never engraphted despite aggressive treatment. Ultimately the last bone marrow biopsy done was more to help forward studies for improving future treatments. His last few days were spent thinking about his children and how he could help if they ever developed this disorder in the future. With almost no chance of survival, we elected to spend his last couple days at home on hospice. He passed away three days after coming home to see his family. He was a bright light in the world. He always thought of others and wanted to support those who were struggling with any challenges. He had a way of connecting with others and getting them to laugh through his humor. He will be sorely missed and a void will never be filled. Our family sends our love and support to all others battling telomere biology disorders. Stay strong and fight on.