Little Aidan Jackowiak Smith, who lived with Cloves Syndrome, causing large lumps and growths all over his body, has passed away following an illness.

A brave little boy who lived with one of the rarest disorders in the world has passed away aged four.

Little Aidan Jackowiak Smith, who had Cloves Syndrome, causing large lumps and growths all over his body, passed away following an illness.

The lad, who could not talk or walk but who had recently started school, was on holiday with his family in Blackpool around three weeks ago when he developed a chest infection, which progressed into flu and then serious lung complications.

He was admitted to hospital in Blackpool before being transferred to one in Manchester, where he received intensive medical support and where family members had been able to visit.

However, Aidan passed away at the hospital at around lunchtime yesterday.

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, his condition became too much for him.

“We will never forget him nor will we ever forget the love and support we enjoyed from the people of Alnwick, the wider community in Northumberland and across the country during Aidan’s all too short life!”

Cloves Syndrome is thought to affect only about 130 people in the world and there is no known cure.

However, his parents Karl Smith and Vikki Jackowiak had been told there was no reason why he should have a low life expectancy.

As a baby, he had to undergo major surgery to remove a mass of fatty tissue in his face and neck, which was affecting his ability to breathe and swallow.

Aidan’s parents also travelled to America to meet the specialist who discovered the syndrome.

They returned, knowing he might need further surgery either to remove a huge lump on his back or brain surgery to help manage his epileptic fits.

However, Aidan was invited onto a pioneering drug trial that it was hoped could transform his treatment and make further surgery unnecessary, which he was set to begin in July.

He was a “very popular” pupil at Alnwick’s Barndale House Special School in Northumberland.

According to the Newcastle Chronicle, Aidan’s dad gave up his job as manager at a money shop to look after him, while Vikki often had to take unpaid leave from her post as a finance officer at Newcastle City Council to take her son to the capital.

Taxi drivers there often gave the family free rides as a goodwill gesture.

The family also recently had their Alnwick home rebuilt, with local tradespeople generously providing their services for free.

Aidan is also survived by an older brother, Daniel.

Source: Mirror