Elk Grove family sheds light on Angelman Syndrome in hopes of more research
ELK GROVE - The world turned upside down for an Elk Grove family when their young daughter received a rare and life-changing diagnosis.
On Thursday, International Angelman Day, they're shedding light on Angelman Syndrome in hopes of furthering research and one day, a cure.
Nearly three years ago, the Tuttle family welcomed home their little girl, a smiling, joyful baby. They knew little Olivia was something special.
But when she started missing milestones, the Tuttles went looking for answers.
"We did a genetic test around 11 months and that's when we found out she had Angelman Syndrome, which was something we had never heard of," said Olivia's father Jake Tuttle.
Angelman Syndrome is a neuro-genetic disorder that affects chromosome 15. The one in 15,000 diagnoses can mean a life of developmental challenges for kids like Olivia.
"It's very hard to talk, walk, move, feed yourself basic things," Jake said. "Anything that requires multiple steps is a challenge."
"It's not easy for you to try to express yourself to someone and they don't understand you. I'm sure that's got to be frustrating on her end," said Yolanda Hughes, a lead infant teacher at Kindercare Learning Center Laguna West.
Multiple speech and physical therapy appointments a week, sleepless nights and endless research became a new normal for the Tuttles.
But despite the emotional and financial toll, Olivia gives them a reason to keep smiling.
"When you receive news like that you kind of mourn in a way what you thought being a parent was going to be like. But then you learn to embrace what is," Jake said.
Now using a walker, she's making steps toward walking on her own one day.
"Every day you get up and see her smile and you see her working on something new and accomplishing a new milestone of something you didn't know she was going to do," Jake said.
Though Olivia may require lifelong care, those with Angelman Syndrome can live long and happy lives.
The Tuttles are working to bring awareness to their daughter's disorder in hopes that further research and a cure are on the horizon.
On Thursday night, there will be a fundraiser at Leatherby's in Elk Grove from 5 p.m. to 11 p.m., where you can grab some ice cream and 20% of sales will go toward the Angelman Syndrome Foundation.