The new year has brought new hope for a child suffering from a rare genetic condition.

Six-year-old Lily Brooker from Kemsley is about to undergo specialist treatment which could help extend her young life.

She suffers from Sanfilippo syndrome, a genetic disorder which has complex detrimental effects on a child’s health and development.

Two years ago, her devastated parents were told the condition was terminal and Lily was unlikely to live long enough to see her teenage years.

Their only hope was to raise enough money to send their daughter for clinical trials at Manchester Children’s Hospital.

It provides a treatment called Genistein which is found to have a 37% success rate in slowing the deterioration in a child’s brain.

A total of £600,000 was needed to send Lily and 20 other youngsters aged between four
and 12 for trials – the target was reached last month.

Her mum, Michelle Brooker, 36, who lives with Lily, her husband Scott, 37, and their other daughter Paige,11, in Donemowe Drive, said: “We’ve gone from being told, ‘there’s nothing we can do for your daughter’, to two years down the line being given a little glimmer of hope.

“We can’t foresee the future, we just hope the treatment does what it says and Lily gets a better quality of life for a bit longer.”

The Brookers’ fundraising efforts included an 80s disco which was held at the Coniston Hotel in Sittingbourne last year, and donations from the British 10k run.

They pooled financial resources with six other families with someone suffering from Sanfilippo syndrome to reach their £600,000 target, a goal which was reached with extra backing from The Society for Mucopolysaccharide Diseases (the MPS Society) which supports those affected by life-limiting genetic conditions.

Recruiting for the trials, which will run for two years, is due to take place in Manchester later this month.

Lily, who attends Meadowfield School in Sittingbourne, is one of 150 sufferers of Sanfilippo syndrome in the UK.

It means she has hearing problems and is unable to speak, leaving her totally unaware of her condition.

According to her mum, Michelle, Lily “has her good days and bad days”, but thanks to the generosity of others, the whole family now has a dream to cling to.

“Six hundred thousand pounds is a lot of money to raise because it’s not a very highly publicised charity and the illness is so rare,” Michelle said.

“We were overwhelmed by the support we’ve had from family and strangers.

“No words can express how grateful we are to those who donated.”