Please help save Dylan’s life

THE parents of a three-year-old Northside boy with a devastating illness have made a renewed appeal to the public to help save his life just a couple of months before his fourth birthday.

Little Dylan Finglas, from Tyrrelstown, was diagnosed with a very rare, fatal condition called Multiple Sulfatase Deficiency (MSD) in October 2014. Without treatment, MSD usually results in a slow painful death before the age of 10.  

Alan Finglas, Dylan’s father, said €2 million is needed to fund the necessary gene therapy which he needs to cure/treat the illness. He described the news that Dylan carries a severe form of the condition as a serious setback.

“Dylan has not got the years ahead of him that we and his doctors first thought,” Alan told Northside People.

“The urgency of our mission has just gone to another level. He’s still quite happy, he’s eating, sleeping, playing, but he’s not progressing. If he could get the therapy, we could stop the deadly progression of MSD.

“In 15 months we’ve raised €508,000. It’s incredible but we must keep pushing to raise as much as possible with the hope of a big medical grant to help us out.

“The ideal treatment is gene therapy, that’s a one-time treatment. It’s the only chance we can give to him.”

According to Alan, 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 this treatment for humans. There are also other treatments possibilities.

Alan and and Dylan’s Mum, Michelle, founded the charity which aims to promote and support research that will lead to positive clinical outcomes for patients suffering from MSD.

A video entitled ‘This Video Will Save a Little Boy’s Life’ (see below), which Michelle and Alan made to raise awareness of Dylan’s plight, has been viewed over 46,000 times.

“Patients with MSD simply can’t wait. There are massive scientific breakthroughs that urgently need funding in order to move forward for humans to benefit,” Alan added.

“This isn’t a question of can it be done; it can be done. Time is of the essence.”

Meanwhile, a photo call was held in Malahide recently where Gibney’s Pub hosted local girl and Dublin Rose Lorna Whyte. 

Lorna, who will compete for the Rose of Tralee title this week, has chosen the MSD Action Foundation/ SavingDylan.com (they are one in the same body) to be her charity for the upcoming year. 

Senior Dublin footballers Diarmuid Connolly, Denis Bastik, Brian Fenton, Cormac Costello and Shane Carthy attended the event to give their support to help promote the charity and the Text to Donate initiative. 

Two of the charity’s patrons were also in attendance – Lyn Maloney, presenter with Irish TV, and Al Foran, a comedian/impressionist from Portmarnock.

The Text to Donate details are: Text Dylan to 50300 to donate €4 – service provider is Like Charity helpline 0766805278.

If you think you can help Dylan and other patients suffering from MSD, or to watch their video, please visit www.SavingDylan.com