jonny kennedy book day

jonny kennedy the boy whose skin fell off

Category:

People & Blogs

Tags:

• jonny
• kennedy
• nell
• mcandrew
• book
• charity
• north
• east

[jordycernik]

just some one how took some time to help out

[hollymarg]

The condition EB is supported by DEBRA, an organisation which runs in most countries. If you want to help in any way just go to the local DEBRA sites...offer human or financial help. Translation of documentation is always useful as the international conferences are always held in English.

Margaret

[jordycernik]

jonney northeast is run to help people in the north east with the backing of jonneys mother and his friends, as debra is the national charity, its not always the best!

sorry to say, but not all charitys treat people the right way! this is my personal feelings.

[tinkerbella1580]

we had to watch 'the boys whose skin fell off' in our RE lessons and it was realy sad.

now, when ever i hear 'having a good time' by Queen i think of Jonny and how strong he was to live for 30 odd years in his condition. He was a truly amazing person and so are all the other people out there living with Oystrophic Epidermic Berlosa! i look up to you guys because i you have so much pain in your lives and like Jonny not on any of those days do you complain about it!!

[jordycernik]

your so kind and right

[gnarlyboy5]

hey dude make another johny kennedy vid i wanna see the part when they change his bandages now that was sad but moving so lets see a new vid dude

[jordycernik]

HEY DUDE,

I dont know if your a "sick o" or just sad, but the pain people and small kids go through with this is more than you could ever know. Even as your commments or stupid, i hope you never exsperince the pain or life jonny did.

[smithmyster]

The film 'the boy whose skin fell off' was the most moving thing iv ever seen on TV!!

The guys a Legend!!!

[aveitmyson]

Ive just watched this on 4OD. Johnny kennedy sounded like a hero, He had a fab outlook on life, even with his skin condition, He sailed through everthing and even though this condition would be bloody hard for anyone to live with, Johnny sounded like he dealt with it fantasticaly and had a great outlook, sence of humour and adventure. A real hero x

[holywelldene]

@gnarlyboy5 fuck you u horrible bastard tel you wot carve ur skin off to muscle every fucking day thats the sort of pain poor old johnny suffered on a daily baisis u sick twat go to hell

[Orangpendek1]

I love this boy ... he was so taff and strong .... thank you ... i miss you ..

[hollymarg]

You are right. Although the DEBRA charity I am involved with is really good and there's just one lady doing EVERYTHING. Maybe that's what makes the difference?

[Danielbk]

Heeey,Who is jordycernik, The reason i ask is i stumbled upon this video and its Very cool. i was jonny's nephew. I was just wondering who you were?

[benfisherman2]

mandaant your absolutely right but i still feel that his life was not worth all the suffering he had to deal with

[mandaant]

i know its unfair that the poor man who was a hero had to live such an agonising life but if not for him and his positiveness there would be no charity for eb.

he lived life in such an incredible way never fearing death and always trying to help others.

RIP

[magicpez]

Thanks for all your hard work Nell!

[jackloobyloo]

Thank you so much i did not know Jonny personly but he was a hero fighting through hard times and he was great thank you from jack