Dylan Finglas, aged three, from Dublin, lives with Multiple Sulfatase Deficiency (MSD).
MSD sees sufferers, over time, develop breathing difficulties, lose their sight, hearing, ability to walk, swallow and ultimately organ failure.
Most children diagnosed with MSD don’t live to see their 10th birthday.
Dylan’s parents, Michelle and Alan, are trying to raise funds for research into MSD – for a clinical trial for Dylan and children with the same condition.
To this end, similar to the Ice Bucket Challenge in aid of Motor Neurone Disease, Kiera Grafton has set up the Cream Pie Challenge (see video above) where those getting a cream pie rubbed in their face – donate €4 by text Dylan to 50300 -and, in turn, nominate others to get the same.