Alice Van Vugt, is an 18-year-old from Kitchener, Ontario. With a love for animals, she’s been involved in 4-H clubs for the last 8 years. She enjoys showing animals and attends several fairs, including the Royal Winter Fair in Toronto and is currently preparing a lamb and beef calf for the Royal fair this fall. Outside of animals, she’s also a competitive Highland dancer, who travels all over Ontario, Quebec, Nova Scotia, New Mexico, Florida, Connecticut, Maine, Michigan, Illinois, Tennessee Wisconsin and even had the opportunity to dance in Scotland in 2018. She also notes a love for archery, astronomy and aviation! A girl of many talents and interests!
Alice is a spontaneous case and was diagnosed with XLH at the age of 4. For several years her family doctor insisted there was nothing wrong, but her mum had a gut instinct that something was not quite right and began advocating for Alice. Eventually she was referred to a pediatrician who looked at XLH as being the potential culprit, referring her to Sick Kids Hospital in Toronto where it was finally confirmed to be XLH. Alice then began treatment with phosphate and remembers how annoying it was to take the medication 5 times a day. She found the taste horrible! Now, she’s in the process of transitioning to adult care from pediatric. She has had a few issues and frustrations with the process but is hoping it will be sorted out soon.
When Alice was 9, the doctors decided to use 8-plates to correct one of her legs in 2014 by guiding the new growth coming, and the plates stayed in for one year. At the age of 11, Alice got involved with a clinical trial for Burosumab at the Yale Center for XLH in New Haven, Connecticut. For 14 months her and her mum flew there every two weeks for the shots, until finally they found a nurse in Buffalo who could administer the drug and continued on with the trial there. After the study ended, they were able to have the drug sent to their house, and Alice could continue to receive the injections. Although her pain remains high, treatment with Burosumab has helped her overall health and stamina. She now has straighter legs, and even got a little taller!
Alice is one of the youngest members of the Canadian XLH Network and sits on our social media committee as well. Like many other XLH’ers, she is passionate about our community and connecting with others whom she can relate to. We’ll have to wait and see what the future holds for this bright young lady! Thank you for sharing your story with us Alice!
If you’re a patient or caregiver with an XLH story to share, we’d love to hear from you, and continue shining a light on life with XLH. Email us at canadianxlhnetwork@gmail.com or send us a private message on our social media.
