Erith mother tries to raise £580,000 for clinical trial to halt son's disease (From News Shopper)

Erith mother tries to raise £580,000 for clinical trial to halt son's disease

4:32pm Monday 24th September 2012 in News By Kelly Smale

A MOTHER whose son is not expected to reach his teens due to a rare genetic condition is trying to raise £580,000 for a clinical trial to halt the disease.

Seven-year-old Bobby Gill was diagnosed four years ago with Sanfilippo - also known as MPSIII Mucopolysaccharidosis - a condition where the body stores up what it should be recycling as it is missing an enzyme. 
 

The stored up molecules are slowly killing off Bobby's brain cells, which has already left him unable to talk and he is soon expected to lose the ability to feed and walk.

His mum Elizabeth, of Shinglewell Road, Erith, said: "We were told there was no treatment for his condition but they were doing research.
 

"We always thought nothing would be around in time for him.
 

"All of a sudden this trial is ready at Manchester Children's Hospital but just needs the money- I never thought this possibility would come up."
 

The 30-year-old added: "Bobby won't necessarily be on the trial but if it was licensed it's something he could be prescribed.
 

"What they expect this to do is reduce the storage and inflammation in the brain by 37 per cent.
 

"He won't get his speech back but it will halt any further progression for him."
 

Around 130 families across the UK have children effected by the disease.
 

They are working together with the MPS Society - a voluntary support group for children and adults suffering from the condition - to raise cash towards the trial.
 

Mrs Gill, who also has an 18-month-old son called Tommy, said: "There was never any hope before but in the past few weeks there has been.

"If the trial doesn't go ahead we would feel it's been taken away from us."
To make a donation, visit shareagift.com/giftpageforbobby1