Meet TrialNet hero: Lilah Montgomery
Meet Lilah: Foggy vapors rise from Lilah's icy, curly tendrils and little puffs of smoke gather about her fingertips as she twirls in relevé. Lilah glides across the room smooth as ice during dance class and finds it easy to keep her nerves cool before recitals.
Lilah became a TrialNet hero at 4 years old after getting screened for type 1 diabetes (T1D) autoantibodies and enrolling in the Hydroxychloroquine (HCQ) Prevention Study. Now 6, Lilah is still being monitored for T1D progression and her superpowers have grown to the point where she can call up a blizzard within minutes by expertly raising her hand and flicking her wrist.
Lilah Montgomery of Ontario, Canada, joined the ranks of TrialNet hero status at the young age of 4.
Lilah’s parents, Laura and Ian, had their family screened for T1D after their son, Lincoln, was diagnosed at age 5. The screening showed Lilah has multiple autoantibodies that signal a high risk of T1D.
The Montgomerys were thankful to have an advance warning, which they did not have with their son. “We were told about the HCQ Prevention Study and were relieved there was something we could do,” Laura Montgomery remembers.
TrialNet’s Hydroxychloroquine (HCQ) Prevention Study was testing the drug hydroxychloroquine to see if it can slow down or stop T1D. The study recently ended and with findings available here.
Laura and Ian decided it would be better to try to delay the disease than do nothing at all. “Even if we had no chance of it helping our family, the fact that our participation could help others in the future is worth it. And, if we could delay Lilah’s diagnosis, that would be great!”
An important factor in making the decision to enroll Lilah in the study was Laura’s diagnosis with stage 4 metastatic breast cancer in 2018. Laura says, “Because of someone’s participation in a cancer clinical trial 10 years ago, I am able to receive targeted therapies that may not have otherwise been available.”
Their one concern was whether Lilah would be able to swallow the daily pill. “One of the moms on a local Facebook support group shared some tips about how to get kids to swallow a pill,” explains Laura. “We started practicing swallowing Nerds and worked our way up to Tic Tacs and Skittles.” You can see how Lilah became a pro at taking her pill here.
It’s an hour and a half drive to SickKids Hospital in Toronto, where Lilah participated in the HCQ Study. Laura says, “We made it fun—like a little vacation—and Lilah’s favorite part was staying at a hotel. Our experience has been wonderful. They made it so easy, and the nurses there are wonderful.”
Lilah, now 6, continues to be closely monitored for T1D, which gives her parents comfort. “Our son’s sudden diagnosis was all consuming,” says Laura. “There was so much to learn, and we weren’t prepared. The HCQ study gave us time to prepare Lilah and ourselves.”
“Knowing in advance gives you time to participate in a prevention study. And the chance to try to slow it down is worth it 100%.”
Interested in becoming a TrialNet hero?
It all starts with TrialNet risk screening that can detect T1D years before symptoms appear. You can learn your risk with a free in-home test kit delivered to your door. All you need to do is collect a blood sample using a fingerstick and send it back using pre-paid, contactless FedEx pick up.
If you prefer, you can order an in-lab test kit to take to a local lab for a blood draw. Or you can schedule a blood draw at one of TrialNet’s many locations. Sign up today at trialnet.org/participate.
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