Today is the 8th intl. CCHS Day, and the 4th since Teddy’s devastating diagnosis of this incredibly rare disease. Most of the year, we like to celebrate Teddy on this account for the beautiful, sweet, funny, thoughtful, strong ray of sunlight that he is. He’s doing so great all things considered. He’s thriving in pre-school, and his favorite things are going to the park, riding roller coasters, and eating pizza. Anyone who meets Teddy immediately falls in love with him forever. What you don’t usually see on this account, is that Teddy’s life is hard, and often heartbreaking and terrifying for us. He attends multiple sessions of OT, PT, and SLP every week. He still has very limited speech and is far behind kids his age physically. He needs 24 hour nurse care (which has been near impossible to find during Covid times) and ventilator support while he’s sleeping or under the weather. He needs breathing treatments at least twice a day. And every 3 hours around the clock when he’s sick. He has to attend constant doctor’s appointments for testing and checkups with multiple specialists. A common cold can and has sent him back to the hospital. Anytime he has even a runny nose we cross our fingers it doesn’t turn into a week long hospital stay or worse. We are always terrified he is going to fall asleep without his ventilator and not wake up. And Teddy is one of the lucky ones with CCHS , the more severe cases come with additional very severe health complications including digestive issues and cancer. There is currently no cure or even treatment for CCHS but the @cchsnetwork
is doing incredible work to fund research to change that. They are a tiny, parent-run organization that desperately needs funds to continue the quest for a cure. We’re hoping for a day in the future when this is all a distant memory, but in the meantime a donation to the @cchsnetwork
of any amount is so greatly appreciated.