In 2002 after years of trying, we were blessed with our beautiful son, Sean.
When Sean was two and one-half months old, we began to notice that he was weak and getting thin. Multiple pokes and prods with numerous tests concluded the diagnosis of Infantile Pompe Disease.
On Valentines Day 2003, at the time of diagnosis, we were told he would not live to see his first birthday.
We had not given up hope. A clinical trial was beginning and we were able to get him into the study. The chosen drug was beginning to work and showed signs of improvement for Sean. Yet, his heart was too damaged and he passed away days before he was to turn eight months old.
We believe Sean, our little blessing, was here for a reason – to help his future little brother be a survivor.
God Bless you Sean!
We miss you everyday!
Editors Note: More information on Infantile Pompe Disease may be found at the following: Pompe Community by Genzyme Corporation, a Sanofi Company.