Website about a guy with VCFS

If you get a chance, take a look at this website about a guy with VCFS or DiGeorge Syndrome as its also called. My daughter Dolly has this syndrome and it impacts heavily onto her everyday life. Apprarently, although few people have heard of VCFS it is the 2nd most common syndrome after Downes Sydrome. Maxappeal is the UK support group for children with DiGeorge syndrome, called after its founder who lost her young son Max, as a baby, to complications related to this syndrome


http://www.friendsofquinn.com/

www.maxappeal.org.uk

Max Appeal Conference for VCFS/DiGeorge

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.