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Family raises $100,000 to help find a cure for daughter born with rare genetic disease

<i>WCCO</i><br/>Lucy Hieb (right) was born with CTNNB1
WCCO
Lucy Hieb (right) was born with CTNNB1

By PAULEEN LE

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    LAKEVILLE, Minnesota (WCCO) — A Lakeville family has raised more than $100,000 to help find a cure for a rare genetic disorder their daughter was born with.

Lucy Hieb was born with CTNNB1, which can impact every aspect of her life, and many who have it aren’t able to live independently as adults.

“We’ve really learned to accept the now and live in the present and celebrate the little wins,” said Charlie Hieb, Lucy’s father.

Unlike traditional milestones Charlie and his wife Megan got to enjoy with their first daughter, Nora, their youngest, Lucy may never be able to walk or talk.

“It’s hard,” Charlie said.

“It’s overwhelming to think too far ahead because we don’t know what Lucy’s future will be,” Megan Said. “I was just picturing a future that here’s what I thought we were going to be with our two beautiful daughters, but now [we have a] huge recalibration of life to now it’s not going to look like anything like we thought.”

There’s only about 400 known cases around the world and because it’s so rare there’s not a lot of research on it and there’s currently no cure.

“You’ll do anything for your child so we just want to give her the best we can,” Megan said.

Shortly after Lucy’s diagnosis, Megan came across the CTNNB1 Foundation, a non-profit in Europe leading the research to find a cure through gene therapy.

“We are all together,” said Spela Mirosevic, the foundation’s creator and president. “Fighting together to get it as soon as possible.”

Mirosevic started the foundation two years ago. She too has a son with CTNNB1.

“Pharmaceutical companies perspective it’s too rare to care, but we mothers say it’s too rare until it messes with the wrong mothers,” she said.

Through the foundation, scientists from around the world are working together to find a way to replace the defective CTNNB1 gene with a normal one they’ve replicated.

“We realized right away there is hope,” Megan said. “So I’m going to hang on to this.”

Like many non-profits, however, funding can be hard to come by.. so the Hieb family knew they had to help. They launched Lucy’s ONEdraiser on GoFundMe. The goal was to raise $100,000 for the foundation by Lucy’s first birthday on March 31.

“We don’t want birthday presents,” Megan said. “This is the biggest gift anyone could give.”

Less than two weeks after they launched, they’ve now surpassed $100,000.

“We kind of shot the moon and we have been blown away,” Charlie said.

“People want to help,” said Megan. “People care and it means the world.”

“We in Slovenia are blown away by her support,” said Mirosevic. “I have to say I have not been so hopeful as I am right now.”

The money raised will help with manufacturing the doses which should begin sometime this spring. If all goes well, the first human clinical trials will follow early next year.

The Hieb family said with hope on the horizon, they hope Lucy’s milestones won’t be too far off either.

“We hope she’ll be walking,” said Megan. “We hope she’ll start to speak and say words. We’ll take any of that. We want to be able to hear my daughter say, ‘Mom.’ Would be something I would hope for.

Mainstream Boutique in Golden Valley is also be donating 20% of all sales to Lucy’s ONEdraiser on Sunday, Feb. 26.

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