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NORTH OGDEN — A North Ogden family has created a community for their son and other children with fetal alcohol syndrome.
Chase Winterton, 11, has fetal alcohol syndrome. The condition is irreversible and can cause life-long challenges, according to the Mayo Clinic. When his parents moved to North Ogden and couldn’t find a community of support, they made one.
When he swims, it appears effortless. For much of his life, Chase Winterton has been swimming upstream. His mom, Julie Winterton, keeps a tall stack of his medical records. They are extensive.
She and her husband, Brad Winterton, first met Chase when he was a toddler in a NICU.
“We were a year short of becoming an empty nester,” Julie Winterton said. “He crawled over and sat in my husband’s lap and my husband said, ‘This is my son.’ That was the end of it. He was ours.”
They adopted Chase, knowing he had medical challenges. Months later, on a shopping trip, he had a melt-down.
“(He was) screaming at the top of his lungs, grabbing my hands, digging his nails into them,” she said. “Very out of control.”
They learned he has Fetal Alcohol Syndrome, or FAS. It causes brain damage and for kids with FAS, affects executive function which controls behavior and judgement.
“Our kids lean toward shame and self-destructive behaviors,” Winterton said. “The pain, self-, and then you see the child just broken, really broken.”
Chase Winterton said that sometimes friendships are hard for him.
“Sometimes, you can get in fights,” he said. “I got hurt bad.”
When Chase and his family moved to Utah three years ago, they had trouble finding resources.
“We hit a wall,” Winterton said. “We just found ourselves very out there, and alone.”
According to the Utah Department of Health, at least 1,500 babies are exposed to alcohol during the third trimester each year in the state. In reality, the number is probably much, much higher.
Al Romeo runs the MotherToBaby Utah program, a pregnancy risk line at the Utah Department of Health. He says the FAS support groups for parents in Utah disbanded years ago, leaving a void.
“The parents really do feel alone, (thinking,) ‘I’m the only one going through this. My child is the only one going through this,’” he said.
Julie Winterton started a group for parents like them on Facebook. It’s called Parents Driving Change UTFASD Support Group.
They began meeting in person regularly.
“We share days when our kids have been really destructive and we’re distraught and we feel very isolated and alone, and we share our successes,” she said.
It’s become a community for Chase, who says many people don’t know how hard it is living with FAS.
“It’s not easy,” he said.
The group is also a resource for other families like them, to help educate others about the challenges their kids face.
“Families learn a lot from each other and learn how to work the system, the school system and the healthcare system, the social support system,” Romeo says.
The group meets every three months and communicates daily on social media.