herald

Saturday 10 December 2016

Rare disorder means little Dylan may not reach his 10th birthday

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, 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.
Dylan Finglas from Tyrrelstown in Dublin. Dylan has a degenerative syndrome MSD which means it is unlikely he will reach his 10th birthday.

This toddler is the youngest person to have been diagnosed with a rare genetic disease and his parents fear he won't live beyond the age of 10.

Two-and-a-half-year-old Dylan Finglas has Multiple Sulfatase Deficiency (MSD) which his dad Alan describes as a "clinically devastating" condition.

His parents Alan and Michelle Finglas from Tyrrelstown are in a race against time to raise €2m in funds for vital research and eventual treatment.

MSD is a rapidly degenerative and fatal condition and most sufferers do not live past the age of 10.

"MSD is an enzyme deficiency which means that Dylan's body cannot clear cells and over time these clog up and become toxic and this has a progressive effect on the brain and the central nervous system," Alan told the Herald.

"We'd never heard of it before, we didn't know what it was.

"It's described by professionals as a clinically devastating condition but to look at Dylan now he's perfectly healthy bar delayed walking and talking," Michelle added.

Dylan was diagnosed at two years when Alan and Michelle noticed he wasn't reaching milestones in terms of speech and his ability to walk.

 

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Michelle and Dylan Finglas

This rapidly degenerative disease will cause Dylan to develop breathing difficulties, lose his sight, his hearing, the ability to walk, to swallow and his organ functions will deteriorate and eventually fail.

Gene therapy in Italy has successfully stopped the disease in mice. Dylan's parents are now raising funds to further this research, which will benefit all MSD sufferers.

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Dylan Finglas

Alan and Michelle have set up Savingdylan.com and the MSD Action Foundation, which is the first of its kind and all monies raised will go towards advancing research and not towards Dylan's medical expenses.

"The whole campaign is based around a video about Dylan called This Video Will Save a Little Boy's Life which we're asking people to watch, share and support on social media," Alan explained.

 

 

"The campaign launched just over two weeks ago and we've already raised more than €30,000 which is incredible."

More information www.savingdylan.com/campaign

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