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Please Stay Home for My Son With Klippel Feil Syndrome and All the Others Like Him

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COVID-19. It’s why we urge everyone to please stay home and why we are doing the same.

My son has a rare disease, Klippel Feil syndrome, which includes congenital scoliosis. Because of the severity of his scoliosis he also now has restrictive lung disease. Let that sink in. Lung disease. He is 5 years old.

Although he may not be in the age range of serious concern with COVID-19, he is in the compromised category. He didn’t choose that category and can’t change it. But we can all do something to keep him safe and others like him. It’s rather simple. Stay home.

The other thing many may not be thinking of is, that if we don’t flatten this curve the longer “non-essential” medical care is shut down. We only have just had our first case in my area in Ontario. But already, as of this week, my son now cannot receive treatment for his scoliosis unless it’s an emergency. This means at this time we can not continue to expand his rods in his back and he can’t receive the other tests we were waiting for. If this continues for too long his scoliosis will get worse as will his lung disease. My daughter who has epilepsy cannot have her EEG right now either and only an emergency follow up.

I realize these procedures not being done immediately will not kill my kids but it matters and it will affect them long-term if this drags out. This lack of medical care right now doesn’t only affect our family. There are many more people in your community facing the very same realities and same worries.

I am not panicking, and neither should you. I am working to stay in that place of peace and staying home with our crew and so should you, please. If you’re not worried and not taking all the precautions because there is no one in your life you’re concerned about please do it for me. For my kids. For Aiden. And tell your friends to do the same!

Getty image by Maryviolet.

Originally published: March 21, 2020
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