We would like to introduce Kelly Leeper, a long-time friend of LHM, who has written an update for us about his life with HLHS. Some members will remember that Kelly kindly traveled over from the States when he was 17 years old to talk to families at the beginning of their single ventricle journey. In those days we did not have any idea in the UK what life as a young adult with HLHS would mean.

Kelly was born with Hypoplastic Left Heart Syndrome. Back then the chances at life were much lower. The doctors gave his parents two choices:

You can leave him here and we will care for him while he dies, or you can take him home to die.

However, a doctor told his parents that he may have a chance but he would have to go to the east coast right immediately.  Kelly was also the sixth person to have the Fontan procedure. After that, Kelly enjoyed his childhood, being able to play all sorts of sports, although he had to be careful not to tire himself out. He even joined his secondary school’s tennis team without telling his coach that he had half a heart.

Kelly is now married and has two amazing daughters. Unfortunately his fight wasn’t over and he had to also battle cancer during his adulthood.  The diagnosis was hard to hear because of the years of struggles he went through with HLHS. Thankfully, he managed to overcome this huge obstacle and has been cancer free for over 7 years