Drive & Determination

Emmett Morgante is a twenty-one year old from Puslinch Ontario. In the fall of 2022 he will be entering his 5th year of his undergraduate program in Human Kinetics at the University of Guelph. His end goal is to become a professor researching biomechanics of bone diseases (ideally specialize in XLH). When Emmett’s not studying hard, he enjoys getting out and going on adventures, playing video games, and has grown up with a passion for gymnastics. Once a competitor, he now coaches as a way to stay involved. 

XLH originated with Emmett’s maternal grandfather who passed it down to his mother. Because of the family history, Emmett was diagnosed as an infant through blood tests, along with his younger sister. His brother got lucky and didn’t inherit the gene mutation. Immediately following diagnosis, Emmett began conventional therapy switching between sodium phosphate and phosphate pills depending on what was accessible and least expensive. Thankfully four months ago Emmett finally gained access to Crysvita through compassionate release. 

As a child Emmett recalls that most of his baby teeth became abscessed and had to be extracted prematurely which resulted in many challenges. Now as an adult, he’s already needed two root canals. XLH has also impacted his life when it comes to being a competitive gymnast and trampolinist. Gymnastics is a sport that focuses on strength, flexibility and proper form, and as a kid who couldn’t straighten his arms, had knocked knees and was terribly inflexible, there were many obstacles for Emmett to work through. He found he had to work harder than most of the other kids, but his determination kept him training as hard as possible, and with the support of his family and coaches he didn’t let anything hold him back. Emmett worked so hard he ended up competing as a high level provincial gymnast and eventually transitioned into competitive trampoline, becoming a national trampolinist competing across Canada and even internationally.

“One change I hope to see for those affected by XLH is a more all-encompassing approach to treatment. In my experience, treatment for XLH has only focused on medications to treat low phosphate even though there are so many other things that come with the condition like osteoarthritis. Exercise has shown to positively affect all bone, joint and tendon health so why is a condition that affects all of those only treated by doctors with medications? I believe an all around lifestyle approach would allow patients to live much fuller lives and give them much more opportunity. The biggest thing that being a part of the Canadian XLH Network has given me is a community. Before, the only people I had ever met with XLH was my family, now that I am a part of the Canadian XLH Network I know people outside of my family that go through the same things with XLH that I do.”

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