A TODDLER faces a race against time in the fight for a life-prolonging drug.
Since August, the families of 20 children with rare Sanfilippo disease have managed to raise £145,000 towards the £600,000 needed to fund a drugs trial which has proved successful in other countries.
In Sunderland, those touched by Jack’s plight have managed to raise £15,000 towards the cause.
And although delighted by the progress being made, Jack’s mum Gemma Nelson, says time is running out for her little boy.
“Doctors have said Jack’s condition will get worse between the ages of three and four and Jack is three in March,” said the 29-year-old mum-of-two. “And once the damage has been done, it can’t be reversed.
“I just hope we reach the fund-raising target this year so that Jack and the other kids can have the drug.
“Because of his condition, Jack is not expected to live past his teenage years, but I’ve spoken to a mum in America whose son has the condition and takes the drug and he is 15.”
Sanfilippo disease causes severe mental and physical deterioration, but treatment, Genistein, is offering the families hope.
It has been shown to halt the progression of the disease in pre-clinical studies but needs to be clinically trialled before it can be prescribed in the UK.
Families of children affected by the disease have ploughed their spare time and effort into raising the necessary funds to pay for the trial.
They faced a set-back last year when a hoaxer pledged to donate £1million for the trial only to back out, but Gemma says it’s made them even more determined to reach their goal.
She says the host of fund-raising activities which have taken place across Wearside to help Jack, including a zip wire, football matches, charity nights and more, have been a huge comfort to the family.
“I wish I could thank each and every person individually,” said Gemma, who is also mum to Lewis, nine.
“Even in the run-up to Christmas people were donating money when they don’t really have any in the current financial climate.
“Even little contributions all help.
“Christmas was tough because I kept thinking that Jack may not be even able to walk by next Christmas. But he doesn’t notice anything, he’s happy just plodding along and listening to his music channels.”
Jack, who lives with his family in Ridgeway, is one of just 150 children in the UK today with Sanfilippo.
In November last year he was awarded a Pride of Wearside award for his courage in living with the condition.
How to help
IF you would like to donate for the Genistein clinical trial, text GENE33 £2/£5/£10 to 70070.
Alternatively, visit www.wickedgenes.co.uk to donate, quoting Genistein as your reason for giving.