Jaxon

Prader Willi Syndrome

Jaxon is a funny boy who loves Disney… anything Disney, almost as much as he loves food! Diagnosed with Prader Willi syndrome (PWS), Jaxon always feels hungry. He will never feel full after eating. In the last few years he’s changed so much. He is now walking and talking, two life-changing advancements. “He started walking at three years old. His mobility has improved which is great because he’s prone to gaining wait from being hungry all the time,” explained his mom Angie. “He’s moving around so much more that we can put him on a more regular diet and include things he loves to eat like shepherd’s pie, pizza and ice cream.” Jaxon loves swimming, therapeutic horseback riding and playing with his dog, Roxy. “With PWS, there’s no scale to go by. Grandview helped us a lot. We had somewhere to check in and get help but they’d also surprise us with how well he was doing. They’d encourage him to push and get outside his comfort zone.” Now with Jaxon talking, Angie said her favourite thing to hear him say is, “thank you so much for understanding my words.” “He will say it while touching my cheek,” she recalled. “I know he’s proud of himself and I am proud of him, too.”