Documentary follows incredible story of young boy’s battle with rare medical condition

Aidan Jackowiak Smith with his parents Vikki Jackowiak and Karl Smith in 2014. Picture by Jane Coltman.
Aidan Jackowiak Smith with his parents Vikki Jackowiak and Karl Smith in 2014. Picture by Jane Coltman.
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The extraordinary story of a little boy from Northumberland with an extremely rare medical condition has been captured in a new documentary which will be aired on Channel 5 tonight.

Aidan: The Rarest Boy in the World tells the heart-warming tale of four-year-old Alnwick lad Aidan Jackowiak Smith, who suffers severe swelling to his face and body.

Aidan Jackowiak Smith in Great Ormond Street hospital.

Aidan Jackowiak Smith in Great Ormond Street hospital.

The youngster was diagnosed with Cloves Syndrome – a complex ‘overgrowth’ condition which has only been detected in about 150 people worldwide – in 2013, following a long-running pursuit by medical experts, spanning more than two years, to find out exactly what was wrong with him.

The documentary, by East Sussex-based if not us films, follows his parents, Karl Smith and Vikki Jackowiak, on their incredible quest to save the life of their son. When they discover that Aidan has a one-in-50million disease, they are faced with an enormous decision; do they take the tried and tested route of surgery or should they embark on a revolutionary new drug trial?

The Northumberland Gazette first told of Aidan’s ordeal in May 2013, when he was two years old and his family were still searching for a diagnosis.

His 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.

Aidan Jackowiak Smith with his mum Vikki, dad Karl and brother Daniel, in 2013. Picture by Jane Coltman.

Aidan Jackowiak Smith with his mum Vikki, dad Karl and brother Daniel, in 2013. Picture by Jane Coltman.

The brave tot, who was born on Boxing Day 2010, has undergone a series of major surgeries, including a gruelling six-hour operation to remove 319 grams of fat from his face and neck.

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.

But interest in Aidan’s story has extended past north Northumberland. In the wake of our story in 2013, the family appeared on ITV’s This Morning programme in the summer of that year. They were interviewed live on the show yesterday morning. Meanwhile, papers around the world have picked up on his story.

And tonight, Aidan’s extraordinary battle will be given even more exposure when the documentary is shown on Channel 5 at 10pm.

Aidan Jackowiak Smith, middle, with his mother Vikki Jackowiak and father Karl Smith during their live interview on ITV's This Morning on Monday.

Aidan Jackowiak Smith, middle, with his mother Vikki Jackowiak and father Karl Smith during their live interview on ITV's This Morning on Monday.