The cathartic click of instant friendship!  Chancey met Isabella in May and they have been continuing a conversation ever since. Talking about Marfan syndrome with Isabella has defused some of its scariness for Chancey who is only 9. Read more!

By Yvette

"I wanted to say a huge thank you for putting my daughter Chancey in touch with Isabella. They have started to chat on the phone and I’m sure will meet up. Isabella even played the piano on a message!

I have also put a shout out on a group and Chancey is now in touch with three girls her age and they will meet up at some point. My daughter had a few things happen (a dog attack/chicken pox and a bully at school) This combination made her focus on Marfan syndrome and ask why. We are fortunate with Chancey she has had her lenses removed but leads a very normal life. However, her confidence was low.

I cannot tell you the difference being able to chat with the girls on regular things and simply talking about hospital appointments in a very matter of fact way has made all the difference. Thank you so much. Interestingly, both Chancey and Isabella are green belts in karate."

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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