JACKSONVILLE, Fla. — Every parent wants to help their child, but it's when they can't help their kids that despair truly sets in.
Now, comes a story about parents' love for their daughter and the hope that life can get better for children like her.
Aidyn Mae Gottlieb received formal testing six months ago, but her mother expected something much earlier than that.
"I just remember sitting on Google for hours late at night, baby won't give eye contact and all these things I was noticing these erratic movements," said Tessa Gottlieb, Aidyn's mother.
"She would faceplant, we would try and do tummy time and it was almost like no reflexes to catch, just totally her arms would go to her side," said Daryl Gottlieb, Aidyn's father. "We knew there was something."
At six months old, Aidyn Mae was diagnosed with an ultra-rare genetic condition called FOXG1 Syndrome, which causes severe developmental delays and structural brain abnormalities.
"It means seizures, and it means she'll never sit up, she'll never walk, she'll never speak, her vision is impaired," said Tessa Gottlieb.
There are less than 1,000 diagnosed cases in the world. The pediatrician told the Gottlieb's there is currently no cure for FOXG1.
"At that moment, your life kind of flashes before your eyes," Tessa Gottlieb said.
As a father, Daryl Gottlieb is distraught that he is unable to help his baby girl.
"There's nothing I can do, there's nothing I can do to change this reality," he said.
Since Aidyn Mae's diagnosis in August 2021, the Gottlieb's lives have become consumed by doctor's visits. But through the strength faith and patience of her parents and siblings, Aidyn has moments when she can enjoy life and just be a little girl.
"When she smiles and she laughs, you can see her for who she really is," Aidyn's mother said. "She's just this beautiful girl."
Aidyn's parents have partnered with "Believe in a Cure" to fund research for genetic testing to find a cure for FOXG1. On Nov. 7, they will host the second annual "Night of Hope" at the Garden Club in Riverside to raise money for FOXG1 syndrome research.
"We want this to be a celebration of what she's done in our community, but also a night of hope for what could be done in her life and other kids with FOXG1 syndrome," said Daryl Gottlieb.
There is no public funding for FOXG1 syndrome. "Pharmaceutical companies have no interest in this because there's 1,000 cases in the world," said Tessa Gottlieb.
100% of the proceeds from the Night of Hope will go toward research for a cure, with hope for a brighter future for little girls like Aidyn Mae.