Quiz night raises funds for Sanfilippo syndrome sufferer Lily Brooker
by Andy Gray
A charity quiz night raised funds for a little girl from
Kemsley who has a rare genetic condition.
It was held at Stevedores Sports Club on Sheppey and collected
£2,000 which will be split between the Oliver Fisher Special Care
Baby Unit at Medway Maritime Hospital and the Lily Brooker
Fund.
Six-year-old Lily is one of an estimated 130 UK sufferers of
Sanfilippo syndrome, a genetic disorder which has complex
detrimental effects on a child’s health and development.
There is no cure for the condition which has left the youngster
from Donemowe Drive with hearing problems and unable to speak.
Lily, who goes to Meadowfield School in Sittingbourne, also has
a shortened life expectancy and it’s unlikely she will live to
become a teenager.
For her parents, Scott and Michelle Brooker, both 36, it has
become a race against time to raise money to send their child for
treatment which could help slow the disease.
A joint-fundraising appeal between the Brookers and five other
families affected by the condition has so far raised £146,000.
It’s still a long way short of the £600,000 target to send a
child for a clinical trial at Manchester Children’s Hospital.
The treatment, called Genistein, is found to have a 37% success
rate in stopping a Sanfilippo sufferer’s condition from
deteriorating.
A Facebook group, Team Sanfilippo UK, has been set up by the
families to raise funds and make others aware of the condition.
Michelle, who has another daughter, Paige, 10, said their next
charity venture is likely to be a summer ball in either Kemsley or
Iwade.
She said: “Lily’s our world and we’re going to give her every
chance of living.”
11/03/13
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