Why “Good Good Good”?
The word Jake spoke most often— “Good” — was affirming of his pleasure at mealtime when he got to taste some ice cream, chocolate pudding or whipped cream. He also said the word when he was enjoying himself or just when he was happy to be with friends and family. With exuberant gusto, Jake frequently bellied out a loud string of “good, good, good!”
HOW DOES JAKE’S SPIRIT LIVE ON?
Through the hashtags #honoringjake and #rememberingjake people who were touched by Jake’s life continue to be inspired and motivated by him. Friends and family donate blood and platelets, listen to Jake’s annual birthday CDs of his favorite hits, support Boston Children’s Hospital by continuing to walk as Team Jake, raise awareness for CDG through the Teddy Bear Roll, and take time to share memories of Jake.
Where does my donation go?
This year, we are raising money to support other families who have children with CDG. We know how many needs such families have, and in Jake’s memory, we want to make their lives a little easier. The CDG CARE Emmett Legacy Fund is a program offered each Spring by CDG CARE and it supplies equipment to CDG children and families around the world.
The fund was created and is supported by Ann & Steve Nguyen, whose son, Emmett, passed away from CDG in 2018. The Nguyen family provides the majority of funding for the program and CDG CARE uses donations and dedicated funds from families/fundraisers to support the rest.
