Model Nell McAndrew visited Tyneside to start an appeal to help families affected by an incurable condition.
The aim is to create a £1m legacy to Jonny Kennedy
She became friends with Jonny Kennedy, from Northumberland, who lived with Epidermolysis Bullosa, where the skin blisters and breaks when it is touched.
He died in 2003 at 36 and now an appeal in his name aims to raise £1m to support other North East families.
Ms McAndrew tearfully remembered their friendship as she joined his mother Edna for the appeal by charity DebRA.
Jonny, from Alnwick, was the subject of a television documentary 'The Boy Who's Skin Fell Off' which featured Ms McAndrew.
On Monday, she broke down in tears as she spoke about him at the launch of the appeal.
She said: "He really touched people. He made a huge impact on my life and on my family. It was his whole personality.
£500,000 has already been raised
"He made it so comfortable to be with him. He brought everyone around him to laughter or tears.
"I think he would be really pleased about today, he would be ecstatic. He's made it, he's famous!
"Obviously the most important thing is that a cure is found."
The blisters the genetic condition creates need to be lanced and dressed daily, which means people suffer a great deal of pain and discomfort.
In the documentary, Jonny's humour and ability to deal with the condition shone through and he touched many people. He died of a related skin cancer in 2003.
As a result, £500,000 has already been raised and the Jonny Kennedy Memorial Appeal aims to raise a further £500,000 to support the 25 families in the North East affected by the condition.
The money raised will also be used to help DebRA's research into skin cancer in EB.
Mrs Kennedy said: "Jonny was so determined to let people see what it was really like.
"It is unbelievable the response we have had. He appears to have changed people's lives in positive ways.
"The saddest part of this was that Jonny thought he was a waste of space and he is not here to be able to see the impact he has made.
"I think he would have been blown away by all of this."