This year I had the pleasure of organising the 2nd 1p36 Deletion Syndrome 2012 Family Conference, and it was held here in my hometown of Birmingham!
Many family's came from everywhere within the UK & Ireland, we were here to learn, educate, laugh, and cry together, and oh what an amazing time was had by all.
We had an
information day at Evie-Anne's school Merstone School, we had lots of
speakers from many medical professions including a Specialist Genetic
Consultant, Specialist Speech and Language therapist, and a Specialist
Gastrostomy Nurse. Everyone learnt something new, from the
proffesionals, but most of all, we all learnt from each other!
The children had there very own
party in an amazing play centre that had a soft play area, ball pits, slides, disco
lights, party games, an entertainer and lots of yummy food, everyone had an amazing
time, even us grown-ups!!
We all visited Drayton Manor Park & Zoo, we had our own hospitality suite, where we could meet up and relax, we also all had a very nice lunch together, Everyone loved it here, there was deffinatly something for everyone to enjoy x
We had an amazing family party in the hotel, we had a childrens balloonist, a magician, a fab disco, and even some very very special friends came to visit the children, Barney the dinosoar! and Mickey & Minnie Mouse and Woodie from Toy Story.
We let of some balloons in honour of the 1p36 angel's we have lost on our long journey together *(
We danced to the hokey cokey with Barney & Woody!!!
The 1p36 Deletion Syndrome UK & Ireland Family's 2013!!
Donkey Riding anyone?
We visited Birmingham's donkey sanctury, a place for special needs children and children with disabilitys to ride the donkeys.
This was a trully amazing time for all
the children and there familys, as some of us were amazed by the staff
and the abilitys of the children to ride the donkeys, and see our
children doing something we never thought we would see them do x