Jonah Hill, Henry Winkler and many more have joined forces to raise awareness around a little-known condition: Congenital central hypoventilation syndrome.
CCHS, as it is known in abbreviated form, is rare; there are only about 1,200 diagnosed cases. It affects the central and autonomic nervous system, resulting in hypoventilation (shallow breathing), which leads to a shortage of oxygen and a buildup of carbon dioxide in the blood. Labored breathing episodes can become severe. Other complications include temperature, blood pressure, bowel and bladder control. It is lifelong, and it is life-threatening.
Hill decided to step up and take action upon learning of—and seeing the immense, far-ranging challenges of—a CCHS diagnosis of his best friends Adam and Blair Fox’s newborn son, Teddy.
“When it all happened, it was very, very scary. Even as a friend,” says Hill. “I met Teddy the day he came home from the hospital. Blair and Adam were my first friends to have kids. Being new parents in general, you’re terrified, but with this syndrome… it was hard to watch.”
Hill also notes that, in addition to the physical difficulty of living with CCHS, there are immense logistical and lifestyle hurdles that come with it. “There is a lot of stuff that you don’t think about until it’s right in front of you. A majority of the research put into CCHS is privately funded, and there are costs—nurses, machinery. If I can bring any light to this, and what it is, and hopefully inspire people to donate, then I’m doing a small part.”
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In February, my best friends’ son @teddyjoefox was diagnosed with an incredibly rare disease called CCHS – Congenital Central Hypoventilation Syndrome – a disorder that affects normal breathing. Teddy and the 1200 other cases in the world must be supported with a machine to help them breathe. There is no available medication to date and almost all research funding for treatment or a cure comes from private donations. I have made it my personal mission to help the @CCHSNetwork raise these much needed funds. To bring awareness to International #CCHSDay on Saturday, I joined Teddy and his amazing parents along with other CCHS children and their families from around the world in a PSA to educate and empower us all to help find a cure. To watch our PSA, learn more about CCHS, join the global conversation and donate to help find a cure, please visit the link in my bio. THANK YOU.
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Hill, along with Winkler, the Fox family, and others, have teamed up to create a PSA with information about the syndrome ahead of CCHS Day, which is tomorrow. He promoted the cause on his own Instagram, and the news quickly filtered outward. Names including Lorene Scafaria and Johnny Knoxville noticed. Many people, this writer included, were hearing about CCHS for the very first time.
“[After the post], I started to correspond with people. One of the things I found amazing was this one man, who does Brazilian jiu-jitsu. I’ve been practicing Brazilian jiu-jitsu for a year—not to flex on everybody at W Magazine!—and this guy has been doing it for much longer. I thought: I can go do that, right now, and not think about it. But this gentleman has had to go through so many steps in order to do something he loves. It made me think how strong people really are, when facing difficulty. They’re the ones who give you perspective.”
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