We were off to Leicester at the weekend to the annual Max Appeal Conference. This is the support group for DiGeorge Syndrome/VCFS - the condition which my little daughter, Evie, suffers from. It was based in the National Space Centre, which was wonderful. We slept in a Travel Lodge a few miles away but travelled up the morning of the conference, which meant a 6.00am start. There`s some nice countryside round there though and I would have liked to look round a bit more.
The MaxAppeal conference was well organised as always, right down to Parking Permits to food and drinks supplied all day. In the lunch break, a man dressed as an astronaught brought presents for all the kids - although Evie was terrified of him, she loved her present ( a toy sewing machine that really sews). Usually, Father Christmas comes, but the meeting is usually held in December. She`s terrified of him too! LOL.
Anyway - theres were doctors and a variety of experts in DiGeorge Syndrome giving lectures and advice. All very helpful - and it was good to meet other families going through the same sort of thing as ourselves. We even had a little dance at the end of the day at the party with the kids. Yawn! Shattered now though. Cant wait to get into my lovely bed - the Travel Lodge bed felt like I was sleeping on a giant shredded wheat.
Anyway - theres were doctors and a variety of experts in DiGeorge Syndrome giving lectures and advice. All very helpful - and it was good to meet other families going through the same sort of thing as ourselves. We even had a little dance at the end of the day at the party with the kids. Yawn! Shattered now though. Cant wait to get into my lovely bed - the Travel Lodge bed felt like I was sleeping on a giant shredded wheat.
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