WILSALL — Imagine having to drive nine hours to Utah every month for medical care. That’s the reality for the family of Lily Bregar, a Wilsall teenager who has a rare genetic disorder known as Myhre Syndrome – which her parents say has less than 300 confirmed cases worldwide.

Lily Bregar is 15 years old and like other teenagers, enjoys watching TikTok and loves pizza and donuts. When asked by her mom what she likes about going to Utah, she said:

“Nothing. It’s too long.”

Megan Bregar and Josh Bregar, Lily’s parents, say Myhre Syndrome has no cure. Megan Bregar said it affects “your entire body. It’s your muscles, your tendons, your ligaments, your muscles, your joints…all of the pathways in your body. Your heart, your lungs, your digestive tract.”

Megan says most kids with Myhre Syndro

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