World’s rarest boy dies, aged four

Aidan Jackowiak Smith with his parents Vikki Jackowiak and Karl Smith. Picture by Jane Coltman.

Aidan Jackowiak Smith with his parents Vikki Jackowiak and Karl Smith. Picture by Jane Coltman.

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A little boy from Northumberland who had an extremely rare medical condition and was dubbed the world’s rarest lad has died, aged four.

Aidan Jackowiak Smith had the complex genetic disorder Cloves Syndrome, which has only been diagnosed in around 150 people worldwide. As a result, he suffered huge swelling to his face and body, and had to endure regular seizures.

Aidan Jackowiak Smith.

Aidan Jackowiak Smith.

Over the last few weeks, the Alnwick youngster’s condition had deteriorated and he had been critically ill in hospital.

Today, at 11.30am, he lost his brave fight.

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

In a touching Facebook message posted earlier this afternoon, 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 xxx.”

Aidan Jackowiak Smith, with father Karl, mother Vikki and brother Daniel. Picture by Jane Coltman

Aidan Jackowiak Smith, with father Karl, mother Vikki and brother Daniel. Picture by Jane Coltman

The tragic news has devastated those who knew and loved the youngster and heart-warming messages of condolence have poured in on social-networking site Facebook to support his heartbroken family and to pay tribute to Aidan.

His death comes just two months before he was due to start a pioneering trial using the drug sirolimus. It was hoped that it would stop and/or reduce Aidan’s swelling and remove the need for any further risky operations, as well as treating his epilepsy, by reducing overgrowth in his brain.

Aidan was born on Boxing Day 2010. It wasn’t until after he was born that his parents found out there was something different about him. They noticed he had swelling on his face, ear and neck, and one foot was much larger than the other. Their baby, who was born two months’ premature, was also suffering seizures.

It took medical experts more than two years to put their finger on his health problems, before he was eventually diagnosed with Cloves Syndrome.

Aidan and his parents during their live interview on ITV's This Morning in March this year. Picture courtesy of ITV.

Aidan and his parents during their live interview on ITV's This Morning in March this year. Picture courtesy of ITV.

In 2013, Aidan underwent major surgery, having 319 grams of fat removed from his neck and face during a six-hour operation.

More recently, the inspirational tale of Aidan and his family was captured in a heart-warming documentary on Channel 5, which aired in March.

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.

The Gazette first told Aidan’s story in May 2013, when his family were still searching for a diagnosis. His courageous battle touched the hearts of our readers and a community fund-raising appeal led to thousands of pounds being collected for the family, helping to pay for costly and regular hospital trips, including to Newcastle and London.

And last summer, the Gazette teamed up with Alnwick-based MKM Building Supplies to launch the Aid For Aidan appeal. The DIY SOS-themed campaign was a community call to arms to help transform the family’s new Alnwick house from a dilapidated shell into a stylish home which was suitable for Aidan’s needs. It was a massive success and, thanks to the help of an army of local businesses, traders and residents, the family were able to move into the refurbished property in time for Christmas 2014.

Interest in Aidan’s story extended past north Northumberland. The family appeared on ITV’s This Morning programme on a number of occasions and papers around the world picked up on his tale.