Lily's runners

Participants: Scott Brooker, Nick Brooker, Simon Brooker, dayne Brooker, Danielle Hayes, becky Oliver
Participants: Scott Brooker, Nick Brooker, Simon Brooker, dayne Brooker, Danielle Hayes, becky Oliver
British 10K London Run · 14 July 2013 ·
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Lily has MPS 111A Sanfilippo disease, it is a life limiting illness with no cure.
Lily on the outside is a happy on the go 6 year old who loves Disney's Mickey and Minnie Mouse as well as Alvin and the chipmunks.
However life on the inside is rapidly changing Lily.
Lilys rare condition increases on a daily basis which slows down Lily's ability to do everything.Basic tasks such as listeneing and talking have already declined .
Eventually lily will lose the ability to do the basic tasks , have no self dependency and will totally rely on 24-7 support.
The Genistein trials of which we are raising funds for is our only hope of trying to secure some form of medical help for lily and mps affected children , to assist with some form of comfort for the future.
So Lilys family ( Scott Brooker aka daddy, uncles Nick Brooker, Dayne Brooker, Simon Brooker, and auntie Danelle Hayes along with our friend Becky Oliver) are running ( well we are going to try ! ) the london 10k marathon on July 14th 2013 .
All sponsorship and support will be going to help raise funds for The MPS society and the Genistein clinical trial.
This trial , being offered from the united states , has no governemt backing and has come to a halt because more money is needed to enable the medical licence to be granted , before being offered to MPS affected children.
At present this , for families of MPS sufferers , is the only ray of light to help our children have a hope of a better future, of less discomfort and perhaps a more dignified life from this terrible illness.
Please help us by donating. Thank you. Lily's runners. Xxxxx
For more information , please log onto the MPS society uk web page , wicked genes and all Genestein Trial Fundraisers .
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