This video could save a little boy’s life

THE parents of a local toddler suffering from an extremely rare, terminal genetic condition are hoping a video they have made will be the key to saving his life.

Dylan Finglas is just like most other healthy two-year-olds, but despite his innocent smile and infectious laughter he’s been diagnosed with fatal Multiple Sulfatase Deficiency (MSD).

The condition causes a progressive loss of mental abilities and has devastating effects on the whole body leading to years of pain. Those affected survive only a few years after harsh symptoms appear. Dylan is the youngest of just 17 patients worldwide currently affected by MSD.

The heartbreak for parents, Alan and Michelle from Tyrrelstown, began when he was 18-months-old. Up until then he was developing normally, apart from a slight delay with walking and talking.

“We weren’t hugely concerned,

? said Alan.

“He was well in every other way except for the walking and talking but we thought he’d get there in his own time.

?

Alan thought that, at worst, Dylan might need physiotherapy and speech therapy. After his 18-month check up he was given physiotherapy but two months before his second birthday a series of tests were carried out – and the results were devastating.

“Our whole world fell apart. It was just so hard to take in,

? Alan said.

With so little information on MSD available Alan went on a mission to track down other patients. Doctors told him there could be as few as five around the world, but a three-month search has uncovered 17 patients to date, and confirmed that Dylan is the youngest known.

Alan and Michele have been in touch with the families of almost all MSD sufferers and have initiated the set up of the MSD Action Foundation and SavingDylan.com, which aims to promote and support clinical research into the condition.

The Finglas family believes there’s a lifeline out there, and they’re hoping a poignant video telling Dylan’s story will go viral and help raise enough funds to develop a promising cure for humans, which otherwise won’t happen.

“There have been breakthroughs with lab tests on mice where they cured the condition using gene therapy,

? said Alan.

“The deficient gene can be cloned and replaced but studies and research are required which will accelerate the process for humans once positive data is obtained.

“We’re trying to raise enough money to fund academic studies and research which could provide the positive data needed to bring the research forward and take it to a stage where treatment can be developed.

?

An estimated

?¬2 million will be needed to support the research needed to develop the lifesaving cure. It’ll take time but could potentially benefit all those with MSD, and as the youngest known patient Dylan has the best chance of being a survivor.

Alan knows such a huge fundraising campaign would need to go global and is hoping the YouTube video will help it do just that. Entitled

‘This video Will Save a Little Boy’s Life’ the 2½ minute clip outlines their story.

The hope is that those watching it will share and support the video, taking it to a worldwide audience.

“What we need people to do is to watch the video, to share it and to support it. That will be the key to our success,

? Alan told Northside People.

“We need this video to go viral globally, it has to be a global campaign, and we’re calling on the people of Ireland to really get behind us. We can make this happen with your help. It’ll benefit not just our son, it’ll benefit other patients around the world and future generations.

?

?¢ This video Will Save a Little Boy’s Life’ can be watched online at www.SavingDylan.com. Facebook: SavingDylan.com. Twitter: SavingDylan_com