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Sadly last year on the 11th of December at 17.45 a day We will never ever forget we received the phone call We had been dreading!!!!!
After 5 yrs of being ignored by EVERY professional we went to / came across / contacted, it was finally confirmed that our Beautiful special funny Girl had a REALLY rare genetic condition called WILLIAMS SYNDROME
Our word fell apart and changed forever!!!!I want to raise awareness so in the future maybe families won't have to wait so long to get a diagnosis as obviously with the health complications this can be dangerous even fatal.
Sometimes when we go to the hospital / doctors We feel we have to tell them all about the syndrome as they no nothing about it (only 1 in 30 gp's will of heard of it ) as a parent this is so scary
we need to raise awareness about this syndrome that affects 1 in 20,000
The life we had imagined with our children (although I no no one has guarantees in life) is now Very very different to the one we had pictured in our heads for the last 5 yrs.
We don't no if Isabella will ever be able to stay in main stream school , hold down a job or ever be able to leave home and live alone this breaks our hearts, Isabella has learning difficulties as well as health complications and the future terrifies us however we also thank god every day that we were give such a beautiful funny crazy girl.
She makes us laugh every single day and touches absolutely every single person she comes across people just love her 💗💓💗

I still don't know why we were given this path and if I'm honest we are still struggling with this life changing forever diagnosis but I do no that aslong as we are alive We will fight to make sure our little girl gets the best shot at life!!!
Please please please if you can spare a few quid I would be superduper grateful as would all the other WILLIAMS families and the foundation who have been my life line over the last few dark months
Please take a moment to look at there website and Thankyou for reading this REALLY long post xx
Www.williamssyndrome.org.uk

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