With the recent passing of John Reed, the hemophilia community lost a true champion. John was so many things to so many different people – husband, father, blood brother, friend. The list goes on and on, as does the list of adjectives one could use to describe John – caring, passionate, compassionate, smart, dedicated.
I didn’t have the privilege of knowing John as well or for as long as so many others, but his impact was great. I met John for the first time about eight or nine years ago. I was still a fairly new HFA board member attending symposium and HFA had just started the Voices campaign. I was invited to listen in on John’s interview. I had no idea what to expect. I had Nick with me, who was 4 or 5-years-old at the time and I was worried sick that he was going to be disruptive. I did what any desperate mother does at a time like this and gave him an electronic device to occupy him in the other room. Thankfully it worked!
John started telling his story and I was mesmerized. I highly encourage you to watch it His story was so moving. It was one of the first times I heard, first hand, what it was like for a young boy growing up with hemophilia in a much different time. Treatments did not compare to what we have now.
John had the nicest southern accent and had such a calm, quiet demeanor. His voice drew me right in, but what was even more remarkable was his attitude. He so easily, and understandably so, could have had such anger and resentment, but he didn’t. Instead, he had sincere happiness for the children growing up today with hemophilia – true happiness that treatments were so much improved and quality of life was so much better. At one point, he turned to me and said, “Your son can run. Your son can RUN!” He said it with a mix of slight amazement and joy. Something that I take for granted my son doing – he couldn’t do, or he couldn’t do without serious consequences. You could tell he was thrilled that Nick and other kids could do that.
I’m not sure what struck me more – how different his childhood was than Nick’s or how happy he was that it was. I’ve never forgotten that moment or the lesson that John taught me.
Rest in Peace John. We will truly not be the same without you.
Tracy, her husband, Lance, and son, Nick, (13-years-old) live in Virginia.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.