Today is Klippel Feil Syndrome Awareness day. This is important to me because my 2 year old son has this.
KFS is defined as having multiple fusions of bones in your neck or spine. It's also very common to have other issues with KFS like heart, kidney, hearing loss, or a number of other things. We're fortunate that Thomas' heart is great, but he has Hydronephrosis in his right kidney, which someday might lead to surgery, and he also has Sprengels Deformality in his right shoulder, which will also be fixed eventually with surgery. He has numerous fusions, most of which are in his neck, meaning he can't look to his left or right without moving his whole body. But you know what, he's so smart he's adapted to just turning his whole body. (Sorry for all this medical lingo, google is your friend :P)
This is a disease that is extremely rare. There is no cure, there is no foundation, there's no way to donate money. All you can do is know it exists. KFS Exists in about 1 in 42,000 live births and most diagnosed are girls. My son has this disease, meaning his diagnoses was more rare.
Please please please spread the word. There is a special video coming out later on all of Rooster Teeth and Achievement Hunter social, and the more awareness we can get the better.
Thank's everyone for your time!