Meet Simon: 2020 Family Advocacy Week Champion
Simon is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Simon and his family will share information about his health journey, Nationwide Children’s Hospital’s role in providing Simon with necessary health care services, and why the public and our elected officials must invest in the future of kids like Simon.
When Simon was just 2 days old, his mother Julie felt like something was off. She sought extra support from Simon’s pediatrician and her lactation consultant.
“The journey ended after five different lactation consultations and three different doctors before they saw what we saw,” says Julie. “But I knew right away that something was wrong; my baby couldn’t eat.”
At 18 months old he was diagnosed with apraxia, global developmental delay and several other disorders including autism, nonintractable epilepsy, and Still’s murmur.
Simon receives occupational therapy, speech therapy, therapeutic recreation from Nationwide Children’s Hospital in Columbus, Ohio, and visits specialists at complex care.
“The impacts on our family have been catastrophic,” says Julie. “We have changed every part of our lives to accommodate Simon and his needs. But he’s also changed us positively in more ways than can ever be described. He’s taught us what our priorities really are, and how to live life with perspective and joy.”
Today, Simon is still receiving treatment and exceeding all expectations.
“Simon would literally not be on this earth without the care he’s received from Nationwide Children’s,” says Julie.