Aidan Jackowiak Smith had a complex and very rare genetic disorder called Cloves Syndrome, which has only been diagnosed in around 150 people worldwide.

The four-year-old’s condition inspired his entire town to pitch in to help adapt his Alnwick home in Northumberland for Aidan’s condition.

Sadly, the inspirational little boy passed away yesterday morning after his health rapidly deteriorated over the last few weeks.

The youngster was on holiday in Blackpool with his family when he picked up a chest infection, which rapidly developed into the flu and then chronic lung problems. He was admitted to hospital but died at lunchtime.

Aidan’s death comes just two months before he was due to start a pioneering trial using the drug sirolimus.

It was hoped that this would help reduce Aidan’s swelling and remove the need for any further operations, as well as treating his epilepsy, by reducing overgrowth in his brain.

He and his family were captured in a heart-warming documentary.

Entitled Aidan: The Rarest Boy in the World, it followed Vikki and Karl on their incredible quest to help Aidan and it featured a trip to Boston, America, to meet other Cloves sufferers and medical experts in the field.

The programme was watched by nearly one-million people.

His father Karl Smith told The Mirror: ‘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!’

It wasn’t until after Aiden was born two months prematurely on Boxing Day that his parents realised he had problems.

At one point it was feared he had the same condition as Joseph Merrick, who was known as the Elephant Man.

Aiden, who could not talk or walk but who recently started school, had swelling on his face, neck and ear and one foot was much larger than the other. He was also suffering seizures. Two years later he was diagnosed with Cloves Syndrome.

He underwent major surgery, having 319 grams of fat removed from his neck and face during a six-hour operation.

Last Summer the Aid For Aidan appeal was launched, which helped transform a shell of a house the family had bought into a home specially adapted for his needs.

Electricians, bricklayers and decorators gave up their free time to provide around £100,000 of labour, fittings and fixtures free of charge.

The family had to move out of their previous home because it was too difficult to move the youngster around.

Thanks to the help of an army of local businesses, traders and residents, the family moved into the refurbished property in time for Christmas.

He leaves behind a doting family, including father Karl Smith, 41, mother Vikki Jackowiak, 37, and older brother Daniel Jackowiak.

In a touching Facebook message posted earlier this afternoon (Sunday), Karl 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.’

Paying tribute on Facebook Susan Angus write: ‘one of a kind this little man. Aidan Smith you brought happiness where ever you went and them kisses and kicks you give were so special.Thinking of all the family.’

Teresa Margaret Young added: ‘Bless him and you all, so very sorry for your loss.’

Aiden’s aunt Chrissy Smith write: ‘My gorgeous nephew Aidan is the most bravest person I have ever known. I had the greatest pleasure of being in his life, he made me smile. He will be in my thoughts and heart for eternity. You are now with your Grandad Ken, sleep tight. Love you forever.’