Rett Syndrome

[lovethecake]

Hi any caring for a dd with Rett Syndrome,would like to hear from you.

Hi ltc, think there might be a couple of mums on this board. Hopefully someone will be along shortly! x

Hi lovethecake my dd is 12 and has retts.

Hi growlybear, nice to hear from you,my dd is 15yrs and has rett syndrome,it can be hard work and as you have seen i am finding life a srruggle at the moment due to the not so helpful incontinence service. Do you have any respite services in your area?

Hi lovethecake nice to hear from you too.So sorry you are finding things hard at the moment with the continence service.Keep going with it though and keep pushing them.You can win.Yes we do have a respite service luckily its about 5 mins from us but it is far from perfect and i have had a few issues of late.We get two nights a month but quite often its cancelled at the last minute.