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 condition.

- Educate the local rescue squads about Marfan Syndrome and Aortic Aneurysm and Disection. CHANCES ARE THEY KNOW VERY LITTLE IF ANYTHING AT ALL.

- Educate the local hospital Emergency Rooms. We were amazed to discover how little our ER knew about Marfan Syndrome.

- Have your child wear a medic alert bracelet.

- Keep an envelope containing medical history, medications, etc ready to go at a moments notice.

The loss of Tyler Kahle teaches us that education and awareness is key in keeping our children alive and well.