Karls Story (Hunters Syndrome – MPS II)

Karl is a little boy who attends the Metabolic Unit in Temple Street Hospital on a regular basis.
Karl was diagnosed with Hunters Syndrome (MPS II) when he was two and a half years old. Hunters Syndrome is a very rare condition with a very small number of known cases in Ireland. Hunters Syndrome is a progressive storage disorder which is caused by a deficiency of the enzyme “Iduronate Sulphatase”. The condition affects every organ and system of the body.
There is no cure for Hunters Syndrome. Karl receives a three hour intravenous infusion every week of an Enzyme Replacement Therapy called “Elaprase”. This is one of the most expensive treatments in the world. Karl gets two vials per week. Karl will have to get enzyme replacement therapy for the rest of his life.
Karl attends various clinics in Temple Street Hospital on a regular basis, including the eye clinic, ears, nose and throat, cardiology, and orthopaedics. Karl suffers with stiffness in his joints which requires him to have regular physiotherapy and occupational therapy.
Despite everything that Karl goes through, and has yet to go through, he never complains. He is a bright, happy and friendly eight year old boy.

Karl’s Mother, October 2015

Translate »