Life with Infantile-onset Pompe is never-ending! And why would you want it to end?! Our son Bruce was diagnosed in 2011 and what a ride it’s been ever since – each day brings new worries and fears but also it brings joy and peace, if you know where to look for it. Our “normal” is like nothing you’ve seen before but it’s ours and we cherish it! Weekly enzyme replacement therapy (ERT) has been our biggest commitment and challenge yet but it’s the best they can do until new gene therapy and second generation ERT comes down the pipeline. Our prayer is always for a cure but how thankful we are for the current options and the community we have so no one fights this battle alone; together we are Pompe strong! Bruce is an active and ornery boy who has the biggest heart for his family and our ranch life; he is our lives’ biggest blessing!
Sarah and her son, Bruce:
