Hello my name is Tillie Mae I was born on 8th December 2007. I am now 4 years old.
I have a big sister called Lexie she is 6 years old, she is my best friend and she looks after me, we love playing together. I like to go swimming and bouncing on my trampoline, I bounce really high. I also love to ride my pony Albert. Mummy says that Im always upto something and causing mischeif she says its ok as I always have a cheeky smile.
In April 2009 I was sadly diagnosed with a condition called Sanfilippo syndrome, also know as MPS111. There is no treatment or cure for Sanfilippo.This means that I will gradually loose all my speech, physical and mental abilities, which means my development will slowly deteriorate until my body is unable to support itself. Mummy and Daddy pray that a treatment is found as they dont want me to go to the angels as they say Im their little ray of sunshine.
Mummy and Daddy have been told that there is a treatment known to dramatically improve the lives of Sanfilippo kids but it's not yet available in the UK as it hasn't been clinically tested. We need to raise £600,000 to fund a clinical trial at Manchester Children's Hospital, so that me and hundreds of children like me can receive this treatment that could save our lives.
There are 130 families in the UK who have children with Sanfilippo disease. Mummy and Daddy have been asked to help the MPS Society to create Gift Pages for kids like me to try to help raise the funds and awareness anyway we can. We know it's an absolutely mad amount of money, but this treatment is known to work and is literally ready NOW, we just need the funding to test it.
We'd love it if you're able to help. We know there are lots of charities out there and money is tight but if you could share this link and everyone just doated £2 then that will get us on the right road to finding treatment for me and other Sanfilippo kids.
Please pass this Gift Page link and our YouTube video www.youtube.com/watch?v=N0pPoQjO5Cgon to as many friends, family, colleagues, press, social media as you can. Anything you can do, from just posting this link to your Facebook wall, or shouting out on Twitter will help us. There are children like me with Sanfilippo disease all over the world - with your help we can cure yucky Sanfiippo.
Thank you, Little Miss Tillie Mae
A big Thank you to MPS Society, Wicked Genes, Sarah & Zoe @ The Havon, Carole Gomez, Lisa Smith, Kerry Sloan, Andrea Parker, Louise Baker, Denise Parkinson, Aunty Rach, Mary Faithful, all the staff at St philip Howard pre school, My carer Margaret Connolly(I love her soooo much), Keech Hospice, Handicapped Childrens action Group, Make a wish fountation, Gosh, and a huge Thank you to the team at Manchester Childrens Hospital they take such good care of me every 4 weeks and make my time in hospital home from home.