Hi everyone!

[charlottesmum]

I have a 7 yo heart healthy but with autism boy, a 6yo with SVT, epilepsy, severe asthma and anaphylaxis and a 7 yo with classical ehlers danlos syndrome with heart complications of lax valves in her heart.

Eleanor, (ehlers danlos syndrome) has a really severe form of it, she is almost unable to walk due to laxisity in her ankles. She is also to tired of an afternoon to walk anymore so she is wheelchairbound in the afternoon.

I would love to hear from anyone else who has a child with EDS. In particular in the wide bay area so that we can meet. Or I am in Brisbane on the 17th of July for our next appointment.