PHOTOS: Boy With The World’s Rarest Disease Dies Aged Four

Four-year-old boy has died from a genetic disorder so rare fewer than 130 cases have been identified worldwide, Alnwick, Northumberland, England, UK;...

Little Aidan with parents Karl Smith and Vikki Jackowiak last year

Aidan Jackowiak Smith suffered from Cloves Syndrome which affects one in 50 million people and has no known cure. He was born with growths covering large areas of his body and suffered from brain damage and epileptic fits. The little boy suffered from a severe form of the disease but his parents Karl Smith, 41 and Vikki Jackowiak, 37, were told there was no reason why he should have a low life expectancy.

Aidan Jackowiak Smith suffered from Cloves Syndrome which affects one in 50 million people

As a baby, he had to undergo major surgery to remove a mass of fatty tissue in his face and neck which made it hard for him to breathe and swallow. Aidan was due to start a a pioneering drugs trial in July that it was hoped could make further surgery unnecessary. His family together with developed had their home specially adapted for the boy.

He was born with growths covering large areas of his body and suffered from brain damage and epileptic fits

But unfortunately he picked up a chest infection, which developed into the flu and then chronic lung problems. Aidan was admitted to hospital where he was put on a ventilator. The youngster, who could could not talk or walk but who had started school, sadly died at hospital on Sunday.

Aidan Jackowiak – with his mother Vikki, father Karl Smith and brother Daniel – along with the team of tradesmen and women who came forward to help them renovate their home

His dad Karl said: “We are all in a state of shock at losing Aidan at such a young age. He was a fighter to the end but in the end, the fight was just too much for him. We will never forget him nor will we ever forget the love and support we enjoy from the people of Alnwick, the wider community in Northumberland and across the country during Aidan’s all too short life,” he said.

Tributes have been paid online to young Aidan after his battle with Cloves Syndrome

Dad Karl left a touching tribute to his young son on Facebook last night. He wrote: “To all our friends and family, we are very sad to say after four of the hardest, longest weeks that our little boy Aidan lost his fight. He tried with all his might to hang on, but it was one fight too many so see you soon our super hero love you always and forever mammy, daddy and brother xxx.”