Mom Seeks Cure for 3-Year-Old Daughter's Rare Genetic Disorder: ‘I Want to Work as Hard as She Does’ (Exclusive)

Bridget Finn’s daughter, Flo, was born with a rare genetic mutation — but the family has put their "grief" into action with a powerful fundraising effort

• Bridget Finn and Sam Beaubien's only daughter, Flo, was diagnosed with the rare genetic disorder, STXBP1.

• There is no cure; however the family has started an effective fundraising effort to help develop therapies and treatments.

• Through Flourish, they’ve raised more than $130,000 towards finding treatment for the disorder.

Bridget Finn says she had an “incredible pregnancy” — even though she was pregnant during the COVID-19 pandemic.

“It was this sort of beautiful time that [my husband] Sam [Beaubien] and I shared together, this prolonged period of meditation around the baby coming and this life change that we were going through,” Finn, the director of the contemporary art festival Art Basel, tells PEOPLE.

Then, on July 11, 2020, she gave birth to daughter Flo.

“It was textbook. It was honestly the most magical experience,” Finn, now 41, tells PEOPLE.

“And I know that's so cliché to say, but I had an incredible experience giving birth ... she arrived and she was perfect.”

It wasn’t until Flo was 9 months old when the family, then living in the suburbs of Detroit, thought something might be wrong — thanks to a parenting app that said their daughter should be sitting up at that point. They started to see a physical therapist, who noticed that Flo had “a little head shudder," which Finn says she now knows "would be called a tremor.”

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Flo was diagnosed with hypotonia — also called floppy baby syndrome — which the National Institute of Medicine explains is “defined as a decrease in muscular tone that varies in severity and duration.”

“There was so much opacity to, you know, was this the fact that we were isolated because of quarantine or was it something larger?” Finn tells PEOPLE.

One of Flo’s doctors thought she might have the connective tissue disorder Ehlers-Danlos syndrome, and the family sought genetic testing for their daughter.

“I was relentless. I called every day to see if we could get her in,” she said.

And on November 17, 2021, the Finn and her husband received the news of their daughter's diagnosis.

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“I was at an artist studio in Detroit and doing a studio visit and I received a phone call. I quickly ran to my car,” Finn tells PEOPLE.

It was there, in her car, that Finn was told Flo had STXBP1 disorder, a rare genetic disorder with wide-ranging symptoms, including seizures, developmental delays, movement disorders and more, according to the STXBP1 Disorders Foundation.

Finn says she was told “many of the children don't ever gain the skill of walking or speaking.”

It occurs with spontaneous changes to the STXBP1 gene.

“There is no controlling that,” Finn tells PEOPLE. “There's a loss there and it comes with a lot of grief.”

But Finn put her grief into action.

“I ended up Googling quite a bit that evening and immediately finding out that the leading specialist in the world focusing on this disorder was at Children's Hospital of Philadelphia. And I wrote them a pretty emotional email right away. “

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She also started thinking, “I will never be able to go back and teach myself neurogenetics at this moment in time. What platform do I have? How can I help? And what can I do?”

Finn reached out to her friends in the art community and organized an auction to raise money for research on the disease — and now spearheads an ongoing fundraising effort, called Flourish (named after her daughter).

“It's really to advance research in whatever way is most critical at the time,” Finn said, adding that they’re focused on the STARR study, a deep dive into the disorder which is happening at multiple medical facilities. The study, she says, is essential for the development of therapies and clinical trials.

“We're extremely hopeful for a disease-altering treatment that will change the outcome for those who are currently living with STXBP1 and those who will continue to be diagnosed.”

In the meantime, they’re planning a Moana-themed fourth birthday party for Flo, who loves the Disney movie, playing in the water and bubbles.

“Flo has taught me more in 3.5 years than I had ever thought or had ever dreamed possible,” Finn tells PEOPLE. “Her influence on my life, I can't even explain how grateful I am for her.”

“She is just so happy to participate in the world and she works so hard for a shot to do that. And as her mom, I want to work just as hard as she does to help advocate for her and for people in her situation.”

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