Grandma tells her story about the fight for her 8-yearold grandson

10 February 2018 | News

To get an impression what the PKAN disease is all about, every day another battle…

We thank Janis Healey, grandma of Riley (8 years old), for her openness and effort to raise funding for a cure against PKAN. Worldwide everyone is putting in all effort to make sure Stichting Lepelaar (NL) and the Spoonbill Foundation (USA) can develop and produce a cure as soon as possible… cause everyday counts!

Read the whole story here: http://www.dailymail.co.uk/health/article-4789870/Grandmother-opens-grandson-s-terminal-illness.html

Facebook

Over Stichting Kans voor PKAN Kinderen

Op dit moment overleeft geen enkel kind de ziekte PKAN. Ze worden niet ouder dan 15 jaar. Waar eerder geen behandeling mogelijk leek, is onderzoek nu in volle gang en komt een oplossing steeds dichterbij. Samen gaan wij dat mogelijk maken. Help je mee?

About PKAN

PKAN (Pantothenate Kinase-Associated Neurodegeneration) is a hereditary disorder that is categorized in the group of distinct rare disorders featured by an accumulation of iron in the brain of young children. Many individuals with the classic form of PKAN lose the ability to move or walk independently between 10 and 15 years after the initial indication of symptoms and will therefore require a wheelchair by their mid-teens. They often lose the ability to walk, to talk, to swallow and their vision. All this while they are often in a full state of awareness as the mental ability of children suffering from PKAN is not always affected. It is progressive and will ultimately result in the patient’s death at a young age.