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 Syndrome, like Lily, also have autism, cognitive delays, and stunted growth.
“At 15 years old, she’s 4’9 and 78 pounds for the rest of her life,” said Megan Bregar.
Lily’s condition was misdiagnosed for years. The Myhre Syndrome diagnosis came two weeks ago.
“She’s just kind of been, for the better part, bed-ridden and unable to do things. Like even grocery shopping with us, she’s got to ride in the cart,” said Megan Bregar.
Lily was in physical therapy at age four, had ear tubes put in for her hearing at age 13, and now, must receive monthly surgeries in Utah to open her airways so she can breathe. At one point, Lily’s trachea was the size of a Caprisun straw.
“I was so scared I was going to come in and wake my kid up for school in the morning and she wasn’t going to be alive in her bed anymore,” said Megan Bregar.
WATCH: Discover the challenges Lily and her family face for essential medical care
Lily’s condition has impacted the entire family, including their 17-year-old son, Jaden.
“It effects his mental health because he feels helpless,” said Megan.
It also impacts their finances, as they must pay for hospital visits, gas, and lodging in Utah.
“Even with the two incomes, we’re still living paycheck to paycheck,” Josh Bregar said.
The Bregars continue to do everything they can to take care of Lily, even if it means going out of state.
If you’d like to help Lily Bregar’s family, visit this link.
