Dylan Finglas was diagnosed with Multiple Sulfatase Deficiency five months ago and his parents Alan and Michelle have launched an appeal to help save his life.
There are only 17 known cases of MSD in the entire world and Alan and Michelle have put out an appeal to raise vital funding for research into a cure.
Alan told The Sun: “When the hospital gave us the news of our son’s condition, I went on a mission to find other patients with MSD.
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“At the moment, scientists have successfully cured the disease in lab tests so the next step is to fund research to develop this treatment for humans. The more patients I find the more people there are who might be willing to participate in a trial. Since I found out about the possible cure, I have become fixated on it.
“But it comes down to money. There’s a price on Dylan’s head.”
Dylan's parents have set up MSD Action Foundation with the hope of raising €2m to fund clinical trials.
To donate, visit www.savingdylan.com
