Saturday 1 October 2016

Parents of little Dylan launch plea to help save his life on his third birthday

Geraldine Gittens

Published 02/10/2015 | 14:22

Michelle and Alan Finglas with their son Dylan. Photo: Gerry Mooney.
Michelle, Dylan and Alan Finglas from Tyrrelstown in Dublin. Dylan has a degenerative syndrome MSD which means it is unlikely he will reach his 10th birthday.
Michelle and Dylan Finglas from Tyrrelstown in Dublin. Dylan has a degenerative syndrome MSD which means it is unlikely he will reach his 10th birthday.
Alan, Michelle, and Dylan Finglas with Health Minister Leo Varadkar.
Michelle Finglas and her son Dylan (2) who has a fatal genetic condition MSD.

The parents of a two-year-old boy with a devastating illness have made an appeal to the public to help save their little boy just before his third birthday.

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

Without treatment, MSD usually results in death before the age of 10.

Two weeks ago, his parents Alan and Michelle were dealt the devastating news that Dylan carries a severe strain of MSD.

Tomorrow, Dylan will celebrate his third birthday, and his parents have launched a plea for Dylan to help raise funds to urgently save his life.

Alan told independent.ie today that €2 million euro is needed to raise money for gene therapy.

He said the news that Dylan carries a severe strain of the disease is "a heartbreaking blow".

"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."

"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 progression of MSD."

"In five months, we've raised €230,000. Now we are asking 5,000 people to give Dylan the gift of life and donate €100 each."

"The gene therapy he needs is a one-time treatment, it wouldn't be a massive burden on the State. It's the only chance we can give to him."

Alan and Michelle, with the help of volunteers, SavingDylan.com which aims to promote and support clinical research advancements for children suffering from MSD.

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.

A video called ‘This video will save a little boy’s life’, which Michelle and Alan made to raise awareness of Dylan's plight, has been viewed over 41,000 times on You Tube.

If you think you funds to help Dylan, or help in any way, see the website. Alan has also appealed to people to visit Dylan's Facebook page and share Dylan's birthday poster.

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