Seth's Story

When I received the diagnosis that my son Seth has H-abc Leukodystrophy at the age of four. I was devastated, my whole world came crashing down, a million thoughts raced through my mind on a daily basis. For the next couple of years all I could do was think how could I possibly prepare myself to ever live without my son, how could I prepare myself to watch him deteriorate and eventually lose all function. It is not something that a parent can ever really prepare for. I was so angry at the world and at God for a long time. I have learned to make the best of everyday and make as many memories as possible. Seth is a very brilliant, funny, and handsome little man, full of personality and loves life, he is determined and he is not going to let leukodystrophy stop him. Not long after Seth’s diagnosis, I came across the H-abc parent group and the H-abc foundation and both have given us so much hope. We are not alone, there is so many families that we can relate to. There is so many people that are working tirelessly to raise funds and to find a cure. Thank you to Michele, all of the doners and to everyone that is working towards a cure, It is all of you that is getting us closer to a cure and giving my Seth and all of our beautiful children a fighting chance at life.