Georgina has been poorly this week and on antibiotics again, she was abit down however a parcel cheered her up today! The pictures of your quilts really do not do them justice they are absolutely stunning! Georgina is so pleased and I am quite in awe! Thank you all for your fabulous work on each piece and the quilting. The idea, the time, the patience, the love everything that has gone into it has left me quite emotional. No one is being allowed to share this quilt, not even her sister, Jessica. Thank you sooo very much x
Georgina was born 6/11/96 right on time, her exact due date! Georgina reached all her milestones early, friends said she was a born leader and a diplomat! She always sorted arguments and looked after any upset kids, her first teacher said she was a dream and whatever we were doing to 'keep on doing it" At about 6 years of age Georgina started forgetting things, she always did everything to music even getting dressed she sang what she was doing and learned her abc by song, days of the week months of the year, she knew them all but suddenly started missing some out. Maths became harder to understand with criess of "I get it then I don't" We thought maybe there was some dyslexia as she had started to work with numbers above ten.
This was the start of a very difficult road, a road of change for the worse, Georgina continued to go backwards, we were given many different diagnosis but they didn't add up. How could these people say my daughter didn't have social skills and was autistic when she had those skills before? I am sure I was labelled a neurotic mother.
After a number of years of hounding all the experts I went with school work in hand, hard evidence couldn't be denied, her writing had deteriorated as had her reading levels. Hours of Internet research gave me some conditions I wanted to discount finally we were sent to Southampton for a weeks stay to do every and any test they could think of.
Niemann Pick Disease Type C was on my list, this was tested for, when I had received no results I chased them, what was happening? I received a letter stating there was no evidence of NPC, phew I thought however we still need to search, no-one said it was still possible, no-one explained how difficult it could be to find the mutations. Finally a year after the biopsy and 5 years after the begining of our search, I was told Georgina had Niemann Pick Disease Type C. I was in the airport at the time waiting to get a plane home from Southampton hospital, we were in the Ladies and Georgina had just had cataplexy and we were sitting on the floor recovering when my mobile rang.
Georgina has been through many changes, she can no longer walk, do her own personal care, can hardly speak, has dementia, has to be fed and medicated through her a peg. Unfortunately she has seizures and suffers badly from vertigo so we can hardly go out anymore. However that cheeky, smiley vivacious and singing girl is still in there and we still see flashes. Georgina still makes me smile every day and all those that have met her along the way still smile too.