Msg for Liz Kaulbach re: Child Growth Foundation in UK

November 17, 2005

Hi Liz,

It's been lovely to read your posts about , and it's great to

see the amount of support once again that this listserve provides! I

am a constant reader of this listserve, and probably should post more

messages, however there is no doubt that this is a fantastic place to

find out as much as possible about RSS.

I am Rae, mum to who is 3.5yrs and has RSS (diagnosed when she

was 6 mos old). On the whole she is doing really well, she gains

weight and height and eats OK, although this is the main area where we

continue to struggle. We are currently in the middle of relocating to

St Albans in Herts.

I just wanted to let you know a bit more about the Child Growth

Foundation, which is the UK equivalent of MAGIC (but a lot smaller). I

am the Group Co-ordinator for the RSS/IUGR group, and there are about

130 members with RSS children (or indeed RSS adults) who live across

the UK. There is an annual convention, next year's will be at the end

of the September 2006 in Northampton. It is only a one day convention

(as opposed to the MAGIC convention which is a lot more detailed)

however it is still a great opportunity to meet other RSS families and

to hear experts talk about RSS (this year we had talks from both

Stanhope and Kirk). The contact details for CGF are

regards to membership is Child, 21 Malvern Drive, Sutton

Coldfield, West Midlands, B76 1PZ, T: 0. Please also feel

free to contact me by email if you would like to chat more about it

(or anything to do with RSS for that matter!). I have friends in Bath

& Bristol (we used to live in Bath) so we are often in your area.

With regards to receiving help towards cost of food, have you applied

for Disability Allowance? We have been awarded this at the lowest rate

for as we have to spend so much time and effort (and money) on

helping her eat - maybe this could be an option?

Well, I hope this info helps, and good luck with trying the new

suggestions that everyone here has made.

With best regards

Rae, mum to , RSS, 3.5yrs, 25lbs 1oz, 90.5cm, Movicol, Lactulose,

asthma inhalers

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