Created: 09/18/2013 8:03 PM WHEC.com
It's a rare genetic syndrome you've probably never heard of before. It's called Pitt Hopkins Syndrome.
One of those diagnosed is 2-year-old Ella Schilling who lives in the Rochester area.
Her parents, Brian and Michelle Schilling, are holding a bounce extravaganza fundraiser on Sunday, September 29, to raise money and awareness to the syndrome.
The Schilling family spoke with Lia Lando on Roc City Tonight on Wednesday about Ella's fundraiser and how others can help out. You can see that interview by clicking play on the video player.
You can also click here for more information and how you can help out. The fundraiser again will be held September 29 at Unity Health Total Sports Experience from 4 p.m. to 6 p.m.