Race against time to help save Dylan’s life

by Sylvia Pownall

DUBLIN Rose Lorna Whyte is backing the parents of a three-year-old boy with a devastating illness in their bid to save his life.
Little Dylan Finglas (pictured with Lorna) from Tyrrellstown has an ultra-rare, fatal illness called Multiple Sulfatase Deficiency (MSD), which without treatment can result in a slow and painful death before the age of 10.
Last year, his parents – Alan and Michelle – launched a campaign to raise the €2 million needed for the gene therapy he needs.
To date, €508,000 has been raised, but Alan says the devastating news that Dylan carries a severe form of the condition means that time is of the essence.
“Dylan has not got the years ahead of him that we and his doctors first thought. The urgency of our mission has just gone to another level.”
Before she headed to Tralee, Dublin Rose Lorna, from Malahide, chose MSD Action Foundation/SavingDylan.com as her charity for the year.
She said: “I wanted to support a Dublin charity, and as a primary school teacher children are a huge part of my life, so I couldn’t think of a more deserving charity.
“When you meet Dylan, he will instantly melt your heart. I’m asking everybody to support this amazing little boy.”
Lorna was joined by Dublin footballers Diarmuid Connolly, Denis Bastik and Brian Fenton, along with Portmarnock comedian Al Foran, a patron of the charity, for a launch at Gibney’s in Malahide.
She urged everyone to watch SavingDylan.com’s “This video will save a little boy’s life” on YouTube, which has already been viewed more than 46,000 times.
Dylan’s dad, Alan, 35, said: “He’s still quite happy – he’s eating, sleeping and playing, but he’s not progressing. If he could get the therapy, we could stop the deadly progression of MSD.
“The ideal treatment is gene therapy – that’s a one-time treatment, would you believe! It’s the only chance we can give to him.”
Scientists at the Telethon Institute of Genetics and Medicine in Napoli, Italy have successfully cured the disease in lab tests. The next step is to fund research to develop the treatment for humans.
Alan said: “This isn’t a question of ‘can it be done’ – it can be done, but time is of the essence.”
Text Dylan to 50300 to donate €4, or visit www.SavingDylan.com for further information.

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