Aidan: The Rarest Boy in the World watched by nearly one-million people

Aidan: The Rarest Boy in the World was shown on Channel 5 on Tuesday night. This image shows Aidan Jackowiak Smith with his mum Vikki Jackowiak. Picture from Channel 5.

Aidan: The Rarest Boy in the World was shown on Channel 5 on Tuesday night. This image shows Aidan Jackowiak Smith with his mum Vikki Jackowiak. Picture from Channel 5.

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A touching documentary which told the inspirational tale of a four-year-old Northumberland lad with an extremely rare medical condition was watched by nearly one-million people on Tuesday night.

The programme, Aidan: The Rarest Boy in the World, was an emotional up-close-and-personal account of Aidan Jackowiak Smith and his heartwarming battle with Cloves Syndrome, a genetic disorder which has been diagnosed in just 150 people around the globe.

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

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

The tear-jerking film followed his parents, Karl Smith and Vikki Jackowiak, on their incredible quest to save the life of their brave son, who has the one-in-50million condition, suffering severe swelling to his face and body.

Produced by East Sussex-based ‘if not us films’, the hour-long documentary captured the tough decision that his mum and dad had to make – to put their little soldier through surgery or embark on a revolutionary new drug trial.

The film was aired on Channel 5 at 10pm and was watched by 920,000 people on Tuesday, taking 6.19 per cent of the viewing figures for programmes at that time. The documentary took higher viewing figures than Channel 4’s Teens, watched by 540,000 people, as well as the third episode of Paul Whitehouse’s four-part comedy Nurse on BBC Two, which pulled in 900,000 viewers.

Reflecting on the figures, Aidan’s dad Karl said: “It is absolutely phenomenal that so many people tuned in to watch the documentary about Aidan.”

Aidan Jackowiak Smith. Picture from Channel 5.

Aidan Jackowiak Smith. Picture from Channel 5.

He admitted that a few tears were shed as the family viewed the touching programme about their incredible journey with Aidan, who was born on Boxing Day 2010.

He added: “It made you realise how far Aidan has come. It was nice for people to see how we cope and manage as a family and see just what is wrong with Aidan.”

His parents have decided to embark on the revolutionary drug trial in a desperate attempt to improve the life of their son, who endured a six-hour-long operation in 2013 to remove 319 grams of fatty tissue from his face and neck.

The medication, widely used in transplant surgery, is not yet licensed to treat Aidan’s condition, but the research team in Cambridge, headed by doctor Robert Semple, believes that it could help the youngster by turning off growth signals in the cells that cause lumps in his face and back.

Aidan Jackowiak Smith. Picture from Channel 5.

Aidan Jackowiak Smith. Picture from Channel 5.

If it works, it would stop and/or reduce Aidan’s swelling and remove the need for any further risky operations. It could also treat Aidan’s epilepsy, by reducing overgrowth in his brain.

Aidan is due to start the trial in July and his parents will know by the end of the year if it is working.

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.

The youngster was eventually diagnosed with Cloves Syndrome following a long-running pursuit by medical experts, spanning more than two years, to find out exactly what was wrong with him.

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.

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 was 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, papers around the world have picked up on the youngster’s ordeal.

As well as Tuesday night’s documentary, the family, including Aidan’s doting older brother Daniel Jackowiak, appeared live on ITV’s This Morning programme on Monday.