PARENTS Paul and Julie Lisle are determined to keep their precious son’s memory alive as they continue their fund-raising drive.
The couple were left devastated when in June 2009, three-year-old Scott, pictured below, lost his battle for life after being diagnosed with neurological condition Rett syndrome.
The brave youngster remains the only boy to be recorded worldwide with the MECP2 Exon1 mutation of the syndrome, which normally affects girls.
Struggling to come to terms with little Scott’s death, the couple threw themselves into a series of fund-raising drives for Rett UK.
And earlier this month, they hosted a charity ball at the Marriott hotel, in Seaburn, where more than 180 guests gathered for an evening of entertainment.
Julie, 39, of Fulwell, said: “We held the North East’s first Rett UK charity ball and we raised £3,000 in total.
“The night was absolutely fantastic and really helped to raise awareness of Rett and how rare Scott was, in more ways than one.”
The cash will be added to the thousands of pounds the couple have already raised through events, including a coast-to-coast walk and three peaks challenge with Paul’s police colleagues.
Stephanie Mitchell, Rett UK fund-raising manager, said: “Paul and Julie are long-term supporters of Rett UK and have been relentless in their fund-raising for us since Scott passed away.
“We are truly honoured to have their continued support and thank them wholeheartedly.”
Rett syndrome is genetic but not hereditary and can occur at any time. People suffering from Rett syndrome have profound multiple physical and learning disabilities, making them totally reliant on those around them.
The syndrome is caused by a mutation of the x chromosome and there are several mutations that can cause the syndrome to occur.
For more information on Rett syndrome, visit www.rettuk.org.