Athletes with CRS

Sometimes I worry because we have always told our son that there isn’t anything he can’t do, yet the doctors have said he shouldn’t do contact sports. This is because of his fused cervical vertebrae and also his kidneys, which are located lower than usual and therefore aren’t protected by his ribs. How are we going to break it to him that he can’t do some sports? However, I am seeing that there are tons of sports he can still do. I have already gotten him into swimming, but there is so much more! Anything is possible.

Kurt Fearnley from Australia has won several marathons, including last year’s New York City Marathon, in the wheelchair division. He also won at the 2004 Olympics for wheelchair racing. (This is not an official Olympic sport yet; this was just an exhibition event.)

Then there is Bobby Martin , who has no legs and plays college football.

Kevin Michael Connolly, is a photographer who also skis. (Note: Connolly never says he has CRS. In fact, he says he has a "spontaneous birth defect." However, I include him here because a lack of legs is sometimes characteristic of people with CRS, mainly from disarticulations.)

Tyler Walker also skis. He says, “I don't want to be viewed as a group of people who are missing limbs and are allowed to do an event just to make us feel good," Walker said. "I would feel really good to be an inspiration because I'm a good athlete or good at skiing, not because I'm in a wheelchair or I mono ski. There's a big difference there.

"When we achieve that, we'll be truly equal."

The Rolling Exhibition

Someone sent me info about this guy, Kevin Michael Connolly, who was born without legs. He has traveled the world taking photos of people staring at him. It doesn't say anywhere that he has CRS/SA, but it seems like he might. His photos are amazing: The Rolling Exhibition

And here is an ABC story about him: Man Without Legs Harnesses Public Gaze

He talks on his site about why people stare and why they want to create stories to explain his condition. The people in his photos all have a similar confused look on their faces. When people stare at Jordan, they usually smile and cheer him on. "You're doing great!" they shout. That can annoy me a lot of days, but I usually try to ignore it. No one has ever taken much notice of me, so it's hard going from that to seeing my son started at wherever we go. But I can imagine that it's hard, too, going through your whole life being stared at. I still can't understand why people do it, and especially why they feel the need to cheer on Jordan. How do they know he's "doing great?" Maybe last week he didn't need the walker, and he's doing WORSE. They have no clue. And as soon as I "handle" one of these starers, another one springs up in his or her place. I can't fight against it. It's just going to happen, and I have to accept it. But more than that, I have to make sure that he can accept it and deal with it in a healthy way. It's kind of hard when I have so many problems with it myself.

Starting a Foundation

I'd love to start a foundation for CRS/SA. If anyone knows anything about starting one, please get in touch with me at twxee@aol.com. Also, if anyone is interested in getting involved in a CRS/SA foundation, also email me! I have met some great people on the message boards dedicated to CRS/SA, and I can see that kind of support continuing through a foundation. I think it's great for the kids to meet others who have the condition, and of course the support the parents get through other parents is also very helpful. I am going to look more into how to do put all of this together, but I don't know a thing about it, so I need help, please!

Happy new year!!!