Minnesota baby with rare condition set for treatment, thanks to generous donors

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Thanks to the generosity of hundreds of people, a Minnesota child with a very rare syndrome may be part of a therapy to cure her disorder.

This week, Lucy Hied will celebrate her first birthday and her parents — Megan and Charlie — say she’s one in a million. Not only for her smile and giggles, but Lucy is unique for the syndrome she was diagnosed with just a few months after she was born: CTNNB1 Syndrome.  

“This past year has been the most difficult year of our whole life,” Megan Hieb said, adding: “It’s been filled with trauma in a way, it’s kind of traumatic [and] that sounds funny as we hold [Lucy] now, but it’s been really hard.”

CTNNB1 Syndrome is a nervous system disorder that could impact a person’s ability to engage socially, think, walk, and talk — it’s so rare that only around 400 cases have been confirmed throughout the world.

“There’s a huge sense of grief and loss, which felt weird and sort of guilty to have because we didn’t lose our baby — we still had our beautiful baby here,” Megan said as Lucy looked back, smiled, and giggled at her.

While the Hiebs say Lucy is not the daughter they thought they were going to have, she’s still a daughter they’ll do anything for. Because of that, it didn’t take long for the family to connect with the CTNNB1 Foundation, based in Slovenia. They then learned about efforts to find a cure — specifically, a gene therapy that’s aimed at correcting the gene causing the disorder.

Still, in order to be part of the therapy they family needed to raise $100,000 — but, with a smile as big as Lucy’s, it didn’t take long … the money was raised through a GoFundMe in ten days.

“If there’s a silver lining, it’s [that] there’s a lot of goodness out there,” Charlie Hieb said. “There’s a lot of love and we’ve been so humbled and so grateful for everyone.”

The Hiebs hope Lucy will be able to start the therapy in early 2023 — the foundation is also hopeful.

“We are now getting close to the end of the two year project, we are really excited,” Špela Miroševič, co-founder and president of the CTNNB1 Foundation, said.

Miroševič says researches and scientists around the world are working on the cure — this work is personal to her as her own son has the syndrome.

“Our children, they don’t have time,” Miroševič, said, adding: “Time is the only thing I will never be able to give my son and that’s why I’m pushing so hard to get the treatment for [him] and also for other children in the world.”

The Hiebs recently started the Love for Lucy organization to fundraise for research, treatment and awareness of CTNNB1. If you’d like to support these efforts with a tax-deductible donation, checks can be made out to the following:

Love for Lucy — EIN No. 92-3011868
Love for Lucy, Inc.
2600 Eagan Woods Drive, Suite 270
Eagan, MN 55121