Friday 19 January 2018

Family need €2m to try to save Dylan's life

Alan and Michelle Finglas have been told son Dylan (4) won’t live past 10 without treatment
Alan and Michelle Finglas have been told son Dylan (4) won’t live past 10 without treatment
Independent.ie Newsdesk

Independent.ie Newsdesk

A couple whose four-year-old son has a life-threatening and extremely rare genetic condition have appealed for help in raising funds for treatment.

Alan and Michelle Finglas's son Dylan is battling with Multiple Sulfatase Deficiency (MSD). He is just one of 45 known cases in the world and the only one in Ireland.

Doctors have told his parents that without treatment, Dylan won't live past 10. For the past week, Alan (37) and Michelle (36) have been based in Temple Street Hospital while Dylan was fitted with a feeding peg.

Ms Finglas said that if they cannot get treatment for their little boy "he will go through a lot of pain and suffering". He will lose his sight, hearing and the ability to sit and stand on his own, as well as the ability to swallow.

"Dylan will have to be fed through a tube and all his bodily functions will start to shut down. He will eventually die," she said.

The couple need €2m to fund research - they have managed to raise €638,710 so far. The Telethon Institute of Genetics & Medicine in Italy has successfully stopped MSD in lab tests. But the research needs more funding.

"We need help - money is the biggest obstacle to giving Dylan a chance of life," Mr Finglas said. "Sadly, Dylan's condition is progressing but we still have huge hope and continue to pray."

Mr Finglas has organised the first international conference on Multiple Sulfatase Deficiency in Dublin next month, bringing together 20 international experts.

The couple have also set up a website, Saving Dylan, to raise funds.

Irish Independent

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