Our Mission
Meet Spencer
Spencer Jones was born on July 7th, 2010. He was a firecracker from the get-go. He lived a pretty typical life, but he always had some kind of swagger, a cool boy two-step if you will. I knew that this was something to be concerned about, so after meeting with 7 physicians, therapists, and counselors we were finally listened to and discovered that Spencer had a rare genetic neuromuscular disorder called Duchenne Muscular Dystrophy.
DMD is a 100% fatal disease, and a disease where there isn’t a cure and treatments are very far and few between. It was a devastating blow to our family, but we promised him that he would live as much of a normal life as we could give him. He was special because he was Spencer, not because he had DMD.
Doing this helped grow Spencer’s passion for giving back and making people who were going through a hard time, who were suffering, who didn’t have a lot of things feel as though they had someone in their corner, that they didn’t have to go without.
Spencer was a fun-loving goofy kid who loved playing video games, making things with Legos, and watching the latest action and superhero movies. Spencer loved baking and eating and singing all day long. He was a boy who always had a song playing in the background.
He loved spending time outside and being a part of nature. He loved his friends fiercely. He loved his family and his sister with so much of his heart that he would often worry about our safety. He was truly the most compassionate 12-year-old boy to ever live on this earth.
Even through the difficult times that he was going through, he was always so grateful for the messages, the gifts, and the donations that helped us spend as much precious time as we had left with him. He never thought of himself only about the others around him.
Spencer passed away peacefully and surrounded by his family 6 months and 1 day away from his 13th birthday on December 7th, 2022.
While he maybe is gone on this earthly plane, he continues to live on through the Spencer Jones Foundation.
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