in september 2003 36 year old jonny kennedy die . he have a terrible genetic condition call dystrophic epidermolysis bullosa ( eb ) which mean that his skin literally fell off at the slight touch and leave his body cover in agonise sore and lead to a final fight against skin cancer . in his last month jonny decide to work with filmmaker patrick collerton to document his life and death and and the result be a film and first broadcast in march and that be an uplifting and confounding and provocatively humorous story of a singular man . not shy away from the grim reality of eb and the film be also a celebration of a life live to the full . produce and direct by patrick collerton and first show in march 2004 the boy whose skin fell off have become the most talked about documentary of that year . it attract nearly five million viewer and after the screen the public donate over half a million pound to jonny charity and debra . a jonny kennedy memorial fund have be set up to raise another half a million with the aim of ensure that jonny kennedy leave a one million pound legacy .