Conner's Marfan Syndrome
Support Group Where
Kids Support Kids

Our prayers go out to the Kahle family. Debbie I know that Shona has talked to you and we include a link to Tyler's video with your kind permission.

After watching the video about Tyler Kahle (see Marfan News page) it makes me realize how important it is to educate the people around us about Marfan Syndome and Thorasic Aortic Aneurysm and Discection.

Some things we can do as parents:

- Make sure the school nurses are aware of your childs conditi...

I think that marfan syndrome really sucks for people like me because I used to participate in a lot of sports and now I can't do hardly any. I have to take Atenolol pills twice a day to slow my heart rate down because sometimes just sitting down it is 124 bpm and it is only supposed to stay at around 80 there is a big difference in those numbers and I don't know how it gets that high at all. I have many doctors appointments because of it. They use a heart monitor on me and they use an EKG and...

Because of my Marfan Syndrome my parents applied to the Make A Wish Foundation and I was lucky enough to be accepted. My wish was to visit my grandparents in England who I had not seen since I was three years old.

I would like to thank my wish granters Cricket and Char and everyone else who helped make my wish come true.

It seemed like it took forever for my wish to happen, we had to get all our paper work and passports and stuff in order but on Sunday September 14th 2008 we were...