I've raised £10000 to fund research into Hunter Syndrome and to help Eddie manage this life limiting condition. Be one of 'Eddies Heroes' and help us do this!
Organised by Nicola Everns
Story
Eddie is four and half and in march 2020 was diagnosed with an incurable genetic condition called Hunter Syndrome.
Hunter Syndrome is ultra rare - just a few thousand people worldwide have this condition and it's outcomes vary greatly.
Lysosomal Storage Disorders, known as MPS diseases affect the whole body; sufferers are deficient of an enzyme which breaks down sugar molecules which instead build up in body tissues causing progressive and irreversible damage.
Eddie receives a weekly infusion of an enzyme replacement which helps mitigate some of the damage to his body and we hope that ongoing research into stem cell/gene therapy will one day produce a cure
