Jake lived…
With CDG (learn more at https://cdgcare.org/what-is-cdg/) his whole life. Jake and his family were not going to let this get in the way of him exploring and communicating in the world around him. Jake and his parents adopted a “Try Everything” motto and in his 11.5 years of living, they covered a lot of ground. Jake’s parents have been amazing advocates and continue to pay their experiences forward by helping other children with CDG. Jake has left a big mark in the hearts of all who knew him.
Jake lived…
Surrounded by an enormous amount of love ALL THE TIME. With his little brother, Lukas, Jake loved reading stories, wrestling, watching movies, and going on adventures. His mom, Julie, was the twinkle of his eye, whether they were baking Elephant Ears cookies, singing, or sharing their love of swimming and splashing in water. Jake’s dad, Eric, was always working on a hands-on craft or technology creation that would allow Jake the access to participate, learn, and laugh. Jake had special and unique relationships with his three grandparents. Jake was showered with love from his Personal Care Assistants (PCAs). They loved Jake unconditionally and many refer to him as their best friend. Jake also had amazing friends who always wanted to Facetime him or hang out in person.
Jake loved…
Swimming and pool time | water sprinklers | dressing up in costumes | dance parties | Star Wars play | camping | speech sessions with Rebecca | trips to Loon Mountain for fast skiing with the New England Disabled Sports program | going outside in rainstorms | being in the treehouse his Dada made for him | hammock time | Museum of Science | Donald Duck impersonations | ice cream, whipped cream and chocolate pudding | making broccoli bites | Disney | sledding | bouncy houses | Beyonce | Shakira | Adele | Peekaboo Barn | laughing | making others laugh | A Your Adorable song | learning with Ms. Abel
Jake loved…
Halloween, which was highlighted by family-themed costumes cleverly designed by his father to incorporate his wheelchair, among them Jake as a farmer driving a tractor with Lukas as a farm animal, Jake and Lukas as pirates on a ship, and Luke Skywalker flying the X-wing Fighter surrounded by his rebel team. Each year the month of October brought a lot of excited anticipation leading to the 31st. Even when Jake was in the ICU and just beginning to sit up in his chair he got to celebrate Halloween. He was discharged in January and in February he requested that his March birthday party be a Halloween theme with trick or treating. The last week Jake attended school in September 2019, in his honor classmates and teachers organized a 2 day epic Halloween party.
