Ching Shen (Sam) Tye

Ching Shen (Sam) Tye

Advisor on IOPD support

Posted On: 08/05/2020

Sam Tye is the father of Sean who was born in 2007 and diagnosed with Infantile Onset Pompe Disease. Living in Aberdeenshire, Scotland, the family have had a very challenging life, coping with the diagnosis and limited care for rare diseases, and arduous travel to hospital appointments.

Despite all their challenges, the family received a grant from Donald Trump to turn their garage into a well-equipped bedroom for Sean and have taken him on many adventures (Sean, not Donald); including Disneyland Paris and even canoe trips!

Sam is passionate about parents being empowered to obtain the very best care and quality of life for Pompe infants, and he will work with the Pompe Support Network to make sure that we don't forget that very important section of our community.