A south metro family is getting closer to their 2-year-old possibly joining a first-of-its-kind gene therapy as the community rallies around them to fundraise. 

We first told you about Lucy Hieb in early 2023 and her journey with CTNNB1 Syndrome – then, her family raised more than $100,000 to help the CTNNB1 Foundation as it researched and studied a possible cure. 

CTNNB1 is a rare nervous system disorder with only around 500 confirmed cases worldwide, Lucy being one – her family says it impacts her ability to walk, talk, and even think. 

Now, they’re back to the fundraising table as the foundation nears the start of a clinical trial. Wednesday, ‘Lucy’s Lemonade Stand’ in Lakeville raised $7,500 – their goal this time around is $20,000. 

“We want to do anything we can to give her the best possible shot at a better future for herself,” Megan Hieb, Lucy’s mother said. 

Part of that included a trip to Slovenia this summer where the CTNNB1 Foundation is headquartered and held its second-ever conference. 

“I think we left feeling really enabled and encouraged, filled with hope,” Charlie Hieb, Lucy’s father, said. 

At the conference, they learned about the progress and next steps for the possible clinical trial. 

“A team of doctors evaluated 83 children with Lucy’s syndrome for possible participation of the clinical trial for gene therapy,” Megan said about their trip. 

That clinical trial could start as early as next summer and will only include 10-15 kids – there’s no guarantee that Lucy will be part of the first round. Still, they’re working to raise money as the Hieb family says the foundation’s budget could run out by December. 

“This disorder is so rare, that it’s not profitable. So, it’s up to the families, kind of, the responsibility falls on our shoulders to fundraise and make this happen,” Megan said. 

You can help Lucy’s journey by donating online – an important note from the family: after clicking the ‘donate’ button, select ‘Gene Therapy Research’ to ensure you help this specific effort.