POWELL, Ohio — Grace Fryfogle is only 7 years old, and she’s already been faced with some serious health challenges. She has been fighting for her life since the day she was born.
Grace was diagnosed with Down syndrome at birth. Also called Trisomy 21, Down syndrome is a genetic condition resulting from having an extra copy of a chromosome. This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges.
“We found out when she was born. We didn’t know of her Down syndrome before birth. So, we had those first few weeks of 'ok, what’s life like now compared to what you thought it was going to be',” recalls Derek Fryfogle, Grace’s dad.
But soon, Down syndrome would be the least of their concerns. Grace also had a life-threatening heart condition. She would undergo her first open heart surgery at just five months old. After making it through that scare, Grace’s parents received even more heartbreaking news.
“It’s just not fair,” said Grace’s mom, Kim Fryfogle.
In October of 2019, at the age of 3, Grace was diagnosed with leukemia.
“It was obviously the worst and hardest time of our life,” Kim said.
At that time, Grace had just started preschool. But education would have to take a backseat. For the next two and a half years, the family would be hyper-focused on Grace and her cancer treatments.
“We’ve just been in survival mode her whole life and we just haven’t been able to come up for air,” said Kim.
Grace has been in remission now for more than a year. She’s feeling good, loving school and just getting to be a child.
But over the summer, she needed help getting back on track with her education. Time lost from being sick and missing school had set her back.
“You just feel so much pressure to help her along and get her caught up,” Kim tells 10TV.
The family sought help from the Down Syndrome Association of Central Ohio and was referred to the Summer Learning Academy.
“It’s just a huge relief, comfort, reassurance to know that there’s a program that we can utilize every year throughout the summer to keep her progressing and make sure there’s no regression. Plus, she loves her friends, she loves to socialize and routine is good for her,” said Kim.
The Summer Learning Academy is just one of many programs and resources DSACO makes available to families in their network, and donations help make that possible.
“It’s needed. I know there are times when people are like, 'I donate to this, and I donate to that. Is my money getting used the right way?'” Derek said. “I mean, we’re here. It is getting used the right way.”
DSACO offers support, provides community involvement and encourages a lifetime of opportunities for people with Down syndrome. But they need your help to continue to enrich the lives of our local Down syndrome community.
The annual Columbus Buddy Walk is this Sunday, Oct. 1, at Fortress Obetz. If you’d like to get more information, register for the walk, or donate, click here.