“My brother, John, was a sickle cell patient and he died in 2015. And he had sickle cell from birth. They had said he would never live to be 12 years old, but he lived to be 48. And so it was a blessing, but we wanted to come out and learn more about sickle cell and try to help find a cure for the ones that go through it because he would go through so many blood transfusions, his body would be racked with pain constantly.
Well, he had limitations on what he could do. He would want to work. He would always try to go out and get a job, but that didn’t last long. Two or three months, he was back in the hospital and the jobs wouldn’t work out. He loves the youth, so he coached youth football. And so he loved that. But when he was sick, he couldn’t do it. So he worked together with some other people. He loves just being amongst the living. […] He didn’t want you to look at him as having a handicap or a disease. He wanted to be able to do what normal people did, even though he was limited. […]
That was his main focus, being outdoors. He did basketball with the young kids, football, whatever he could do to make the youth be able to enjoy life. Cause that’s what he was saying, live your life to the fullest because he knew whatever day wasn’t promised to him. So, but he didn’t let that limit him.”
–Janice, SCD Advocate
