ROSEVILLE, Calif. (KTXL) — A Roseville couple says they’ve made it their mission to find a cure for a rare disease after their son was diagnosed with it a few months after he was born.
“My pregnancy was easy. It’s our first child. We got pregnant quickly,” said Sophia Phillips. “We went home with what we thought was a healthy little boy.”
But soon after Sophia and Ryan Phillips brought their son, Crosby, home things took a turn for the worst.
“Around 4 months old at his well check-up, he wasn’t meeting the typical milestones. He wasn’t looking at us. He wasn’t laughing. He wasn’t rolling over,” Sophia Phillips said.
Crosby was diagnosed with FOXG1 syndrome, which means he has an underdeveloped brain from a lack of the FOXG1 gene.
At the end of 2020, Crosby suffered a series of seizures.
“It also results in epilepsy. Crosby had a pretty significant episode at the end of last year,” said Ryan Phillips.
At that point, the couple decided they wanted to get behind the science to figure out a cure.
They teamed up with the FOXG1 Research Foundation to work with institutions in California, New York, Ohio and the U.K.
Ryan Phillips says so far the work has been successful in trying to help people like Crosby get normal levels of the gene back into their bodies.
“It really empowers us to conduct research and develop therapeutics to correct the problem,” Ryan Phillips said.
While the journey is far from over for their little family, the Phillips hope that one day they can find a cure.
“We dream of the day that we may be able to have a conversation with Crosby or play catch in the backyard,” Ryan Phillips said. “We think that’s possible, and that’s why we’re here doing what we’re doing.”
The family has a GoFundMe page and all the money raised there will go towards research for a cure.