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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. #cchsawareness #cchsday2022
Today is International Rare Disease Day. We usually like to fill Teddy’s account with pictures and descriptions of all of the beautuful things in his life. He is such a happy, funny, smart, and engaging kid. His smile is infectious and everyone who meets him falls in love. But today is a good day to remember how hard his life and all those living with rare diseases around the world can be. He relies on a ventilator to survive while sleeping and needs around the clock care. He has countless doctors visits every month, and a simple cold can and has put him back in the hospital. Things that we take for granted like swimming and sports have to be done with extreme care, if at all. The list goes on and on. There is currently no cure or even treatment for CCHS but the @CCHSNetwork and @keepmebreathinginsta are doing great work to raise money to change that. Your support is so greatly appreciated. #rarediseaseday #castingalightoncchs ❤️🦓❤️
Happy Giving Tuesday!! We are so beyond grateful for all of the incredible donations to support the @cchsnetwork and their quest to find a cure for Teddy and all those afflicted with CCHS. With over 400 donations from all around the world, we are so close to hitting our goal of $25000. Any amount helps! ❤️❤️❤️ #cchsawareness
Mark your calendars, the 8th Intl. CCHS Day is almost here! (November 12th). Go to the link in my bio now to purchase glow in the dark CCHS Day T-shirts/ hoodies, etc. with our amazing new logo! You can also go to the CCHS website to donate to support the CCHS Network in its quest to raise funds and awareness for this super rare and devastating disease that affects Teddy his CCHS cousins. #cchsawareness
Happy 4th birthday to our amazing @teddyjoefox !!!! Another year living with CCHS and a Teddy is still the happiest boy we know. Even with the daily struggle of PT, OT , SLP, breathing treatments, suctioning, trachea changes, sleep studies and hospital stays,Teddy is able to find so many moments of joy, and put a smile on the face of everyone around him. He is slowly able to enjoy more and more age appropriate activities, but there are still so many basic things his condition keeps him from. The @cchsnetwork is doing amazing work raising funds for research into treatments or a cure for Teddys condition. Link in bio for anyone who wants to donate. ❤️❤️❤️❤️❤️❤️❤️
