Cole Kelley

My name is Cole Kelley. I am 7 years old and in 1st Grade at Mars Hill Bible School. I love hip hop music, dancing, and playing fortnite with my friends. I love riding my scooter and I have the best dog, Molly, ever. On the outside, I look like an ordinary boy, but on the inside it’s another story.

I was diagnosed with a rare blood disorder when I was 2 months old, called Diamond Blackfan Anemia. My body did not make red blood cells, the ones that carry oxygen. I have had over 180 blood transfusions at St Jude. Last year. I would get a shot 5 times a week to help me not get sick, and help my immune system work. I also get a 12 hour infusion every night to get the iron out from the transfusions. It wasn’t fun, but I knew I have to do it. My immune system kept getting really bad and they found out I have DADA2 — deficiency of the enzyme ADA2 (Adenosine Deaminase 2). It is a recently discovered and extremely rare genetic disease that useally starts in childhood.  This is a gene mutation that can cause many different problems. It can cause strokes, severe systemic inflammation, immune deficiency, organ failure, and growth problems.

I am in Maryland now at the National Institutes of Health where I received a bone marrow transplant on November 15, 2018 because my bone marrow is so sick and it is not working properly. However, that transplant failed. On March 1, 2019, I received another transplant. My numbers are not yet what we want them to be but they are slowly increasing, which gives us hope. Even though I am not yet cured, I know God is not done yet! I still and will always be Cole Kelley. My personality and attitude runs rampant through the halls of NIH. I love pranking my nurses and they can’t get enough of my singing and dancing.

NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability. With the help of this amazing team, the generosity of my donor, and your prayer, hopefully one day I will be cured!