LAKEVILLE, Minn. — Little Lucy Hieb is battling one of the rarest diseases in the world. Called CTNNB1 Syndrome, it affects the 10-month-old's ability to do almost everything.
It's so rare that funding to find a cure is almost nonexistent, so Lucy's family is taking matters into their own hands.
"They said, 'We better see if there’s an underlying cause; we’re going to do this huge test,'" said Lucy's mom, Megan Hieb. "I can remember it so clearly."
CTNNB1 Syndrome is a neurodevelopmental disorder that impacts only 400 people in the world, many of whom will never talk or walk.
"It’s a very lonely feeling because not many can relate," said Megan.
Lucy's parents, Megan and Charlie, are fighting to give Lucy the best life possible. The couple started a fundraiser for a groundbreaking and costly cure called gene therapy.
According to the CTNNB1 Syndrome Foundation, gene therapy "Is a single dose treatment in which a patient receives a new, working copy of the missing or nonfunctional gene. The new gene copy is able to give the body instructions to produce a particular protein that the person is missing."
The couple has a goal of raising $100,000. They plan to give the money to the CTNNB1 Syndrome Foundation so that Lucy, and others like her, can have access to the gene treatment.
"It was scary to put it out there, but at the same time, I feel like when it’s for your child, you’ll do anything it takes to give her the best chance," said Megan.
"I think we're both moved and overwhelmed by all the support," said Charlie. "I think our tribe has really stood up."
In the meantime, Lucy does therapy four times a week, getting stronger every day. The smile she's known for is growing bigger all the time, too.
"You can tell she had a fighting spirit from day one," said Charlie about Lucy. He also credits his wife for her strength throughout this, calling her the "backbone" of the family as she fights her own battle.
Megan has chronic kidney disease and is searching for a living donor. According to the American Kidney Fund, there are more than 106,000 people on the national transplant waiting list with 92,000 of them waiting for a kidney. If you're interested in finding out if you're a match, you can email Megan's donor coordinator at jennifer.bodner@hcmed.org.
"It’s learning to enjoy the little wins and the everyday presence," said Charlie. "I think we’ve gotten skillful at that."
The Hieb family says they're thankful for everyone's support. There's another fundraiser happening on Feb. 26 at Mainstream Boutique in Golden Valley.
From 10 a.m. to 5 p.m., the store will donate 20% of its proceeds in honor of Lucy.
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