Conference report

The venue was Alder Hey Children’s Hospital in Liverpool & the date was 30th November 2002 … it seems such a long time ago!!

Our audience was rightly enthusiastic about our guest speaker Donna McDonald McGinn, who is Director of Clinical Genetics at the Children’s Hospital of Philadelphia and the specialist “22qandYou” Centre which is at the forefront of knowledge and research.

Parents and professionals alike (a number of venerable doctor......
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AGM report

The AGM is an important part of our constitutional obligation as a charity but we hold it during the conference meeting as most of our members probably wouldn’t find it terrifically exciting prospect to turn up for on it’s own!

The meeting was declared and quorum and reports were given by the treasurer and chairman and were only interrupted by one or two snores from the spell-bound (?!) audience! The motions to maintain Julie Wootton as chair......
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Charlie-Anne Avery—then and now….

Charlie-Anne was born on Monday 12th February 2001, weighing a healthy 7lb 101/2 oz, from the moment I gave birth I knew she was different to my other three children. She had a mass of black hair, her facial features looked different and her thumbs looked broken.

I mentioned this to my family and medical staff, they all said that I was picking faults and to leave her alone, so I just carried on enjoying my new baby, but I always ha......
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Chocoholics raise £211 for Max Appeal!

Sandra told us that she and her neighbour, Lindsay Traith, got together to raise money. Lindsay wanted to raise cash for MPS (Mucopolysaccharide Society) based in Manchester.

Photo: Lindsay Traith, Samantha Brockie (MP disease sufferer) and Charlie-Anne

Lindsay arranged to host a chocoholics party at Sandie’s house and organised raffle prizes, for which she then stood in the rain, wind and cold weather selling raffle tickets to the t......
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Robin’s special mixture

Robin’s Mum, Jennie, has kindly written in to share her recipe for fussy kids with constipation!

Robin’s constipation was so bad when he was in ICU at Alder Hey that doctors decided to check him for Hirshprung’s disease......
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Lapland 2002

After 3 ¼ hours on the plane (during which time we penned a quick note to Santa and viewed the video “Santa Claus” which I noticed was avidly watched by ALL the adults) we landed inside the Arctic Circle.
The snow was the “right type” – powdery, non-slippery and non-slushy. We chose to go by mini-bus to Santa’s village though some went by skidoo – and suffered! It was –17o’s! We all wondered how the driver knew which way to go when everywhere lo......
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