HI!
Thank you for taking an interest in learning more about Dylan.
From the battles and pain Dylan faced we will build a sustainable and lasting foundation that encourages healing and growth, supporting those who need it the most, at the time they need it the most.
Dylan was officially diagnosed with Diamond Black Fan Anemia (DBA) in January of 2020. He was 26yrs old.
But we knew since he was 2yrs old that there was something going on they just couldn't define it. At 2 he went into bone marrow failure, testing didn't show anything definitive just that he wasn't making red blood cells. He was given steroids and bounced back quick, producing red blood cells right away, he was able to get off them fast and the thankfully had a fairly normal childhood. Though we had to get frequent blood tests and watch things he was one of the lucky ones who had very mild symptoms. That is until late 2019...
He again went into failure and this time needed transfusions, every two weeks, he started steroids again and they didn't do what they did when he was little - we were so scared. After a couple months he started bouncing back - he was doing great - no transfusions, no steroids. We got on the bone marrow transplant list and found a donor - 10 out of 10 match! We were soooo blessed and so grateful as we know sometimes it hard to find that - we didn't have anyone in the family so it was terrifying.
But in late 2020 he started complaining of arm pains and his arm swelled and swelled, after many test and back and forth they finally did a CT scan in December 2020, they found a 14 cm Mass on the left side of his chest - he had a very aggressive Lymphoma a very rare one - called Peripheral TCell - which according to the doctor he is the only one registered with DBA to have it - of course Dylan was always unique.
So not only did he have DBA - one of the rarest of the rare - he now had this horrible Lymphoma. He fought so hard, he kept his positivity and spirits up -
sadly we lost him 5 months later May 11,2021.
Through his treatment we often talked about how Dylan wanted to tell his story. Many people he connected with were so touched by him, his kindness and his comforting energy, they often told him he should write a book. He said "when I beat this I want to help others, I think I would be really good at that." He absolutely would have been, he was considering becoming a home care paramedic, he knew he could help so many going through the battles he did.
We will tell his story, we will help others as Dylan wanted to, we will carry his wishes and legacy forward.
