Monday 26 June 2017

Parents of Dylan (2) desperate to find cure for rare genetic condition MSD

Alan, Michelle, and Dylan Finglas with Health Minister Leo Varadkar.
Alan, Michelle, and Dylan Finglas with Health Minister Leo Varadkar.
Michelle Finglas and her son Dylan (2) who has a fatal genetic condition MSD.

Geraldine Gittens

The parents of a two-year-old boy with a devastating illness are desperately trying to save their little boy before his condition gets worse.

Little Dylan Finglas was diagnosed with an ultra-rare, fatal condition called Multiple Sulfatase Deficiency (MSD) five months ago.

Dylan’s dad Alan (35) told independent.ie today that without treatment, MSD usually results in death before the age of 10.

“It felt like we’d been hit by a train for a couple of weeks when he was diagnosed. We couldn’t function.”

“Dylan is very well. There’s a delay with his walking and talking, but he’s very happy. He’s not on any medication.”

“It’s unclear when he might become unwell. Normally without treatment [children with the condition] wouldn’t see their tenth birthday. At the moment Dylan is the youngest in the world with this condition.”

 

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.

Alan and his wife Michelle have set up SavingDylan.com which aims to accelerate research and development of MSD treatment for humans and increase awareness of this devastating disease.

Michelle said: “Every day that Dylan is well is a great day but sadly these days will run out if we do not get help. We want to make sure that we give Dylan and every child with MSD the best possible chance at life.”

“I became very focused. There will be a benefit for future generations, and a benefit of the wider community. We’re trying to give Dylan and other children a chance of life,” Alan told independent.ie.

“Our aim is to raise €2 million euro. It is a huge amount of money but we hope we can achieve success with the public’s help. I would appeal to anyone reading this to watch the video, share it on social media and if you have some money to spare to please donate it and help save lives.”

Michelle and Alan are urging the Irish public to share the video ‘This video will save a little boy’s life’ in the hope that funds will be raised for MSD and that awareness grows internationally.

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