Monday 24 September 2018

Rare disorder means little Dylan may not 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.

Dylan is two-and-a-half-years old and has Multiple Sulfatase Deficiency (MSD) which his dad 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, so 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-old when Alan and Michelle noticed he wasn't reaching milestones in terms of speech and his ability to walk.


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.

Alan and Michelle have set up savingdylan.com and the MSD Action Foundation and all monies raised will go towards advancing research and not towards Dylan's medical expenses.

"The whole campaign is based around a YouTube 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."

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