The distraught parents of a truly unique little boy who died on Sunday have spoken of their shock and devastation, admitting: “It feels like our hearts have been ripped out.”
Inspirational four-year-old Aidan Jackowiak Smith suffered respiratory failure after being critically ill in hospital for a month.
Dubbed the world’s rarest boy, the Alnwick lad had the complex genetic disorder Cloves Syndrome, suffering huge swelling to his face and body. He also endured regular seizures.
Aidan, described as a superhero by his loved ones, leaves behind a doting family, including father Karl, mother Vikki and older brother Daniel.
And while his distraught parents say they are so grateful for the four-and-half years they had with their precious son, they added: ‘It simply wasn’t enough’.
Vikki said: “We feel like our hearts have been ripped out. We feel empty without him. We feel numb.”
The youngster had been on holiday with his loved ones for just a day when he fell poorly to flu on Tuesday, April 7.
The trip to the Blackpool area had been paid for by the Family Fund; a charity which supports families with severely-disabled children.
Aidan’s condition deteriorated as he contracted a secondary infection. And on Sunday, at 11.30am, he lost his brave fight, suffering respiratory failure in the Royal Manchester Children’s Hospital.
Vikki added: “The last month has been four of the hardest, longest weeks. Aidan tried with all his might to hang on, but it was one fight too many.”
We feel like our hearts have been ripped out. We feel empty without him.Vikki Jackowiak, the mother of Aidan Jackowiak Smith
Despite suffering from a one-in-50-million genetic disorder, the plucky youngster never let life get him down.
Karl said: “He was our little superhero. He was a gorgeous boy with a lovely personality. He loved, he lived, he laughed and he cried, as we all did.
“As parents, Aidan took us on such an amazing journey over the four-and-a-half years he was with us. Some of the things that we have seen and done would not have been possible without Aidan in our lives. We are so grateful for the four-and-a-half years we had with Aidan, but it just wasn’t enough.”
To reflect Aidan’s happy personality, the family are encouraging mourners to wear bright colours at his funeral, which will take place at Alnwick’s St Michael’s Church on Thursday, May 14, at 1pm.
Donations will go to Barndale House School, in Alnwick, where Aidan was a pupil, and Newcastle-based St Oswald’s, which provided respite care for the youngster.
“These are the two places where Aidan was at his happiest,” said Karl, who had given up his job as a salesman to become a full-time carer for his son.
Aidan’s death comes just two months before he was due to start a pioneering drug trial to try to improve his condition.
Karl said: “It is such a shame and it is so hard to know that he will never be able to see the impact of that.”
The tragic news has devastated those who knew and loved the youngster and heart-warming messages of condolence have poured in to support his heartbroken family and to pay tribute to Aidan.
The touching sentiments are reflective of a community which has rallied round to help the family over the years, from raising money for costly hospital visits to helping transform their new home to make it suitable for the youngster’s needs, as part of the Gazette-launched Aid for Aidan appeal.
Vikki said: “The comments have just been lovely. It makes you realise that Aidan touched so many people and he was loved by everybody. He was such a special little boy, not just to us, but to everybody.”
Karl added: “We live in a fantastic community and we want to thank them for all of their kind words. We really appreciate it at what is such a hard time for us. The support we have received over the four years has been amazing.”
While the family’s home was renovated during the Aid for Aidan appeal, the back garden still needs to be finished. The dream was to create a sensory area for Aidan. Karl and Vikki are keen to complete the space in Aidan’s memory.
“We want to push on with the garden and finish what we started,” said Karl.
Aidan’s inspirational story spread beyond Northumberland, with the little lad’s brave journey touching people around the world.
The family are determined to build on this and help others in the name of their beloved son.
Vikki said: “We have got to carry on Aidan’s legacy, regardless, and this really is just the beginning. We want to do fund-raisers and other bits and pieces.”
Indeed, he may have only lived a short life, but brave and inspirational Aidan has certainly left behind a huge legacy.
His determined fight captivated people around the world, who were moved by his incredible journey.
Quite simply, this plucky lad touched the hearts of all who met him and all who followed his courageous story.
While a recent illness proved to be one battle too many for this little soldier, determined Aidan fought bravely against what life threw at him.
In just four years, this tough little cookie went through more than most adults could ever experience in a lifetime.
But defiant Aidan never seemed to let this get him down and he will be remembered for his infectious laugh and bubbly personality.
He may have looked different. But on the inside, Aidan was just like every other child. He loved to laugh. He loved to giggle. He loved to live.
In the words of his family, he was a little fighter. He was a miracle child. He was unique. He was a true superhero.
Aidan was born on Boxing Day 2010. But 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.
Despite numerous tests and appointments with specialists, it took medical experts more than two years to put their finger on his health problems. At the time, his parents were told that their son was so unique, there was no specific diagnosis for him.
But, after a tough journey through the unknown, a breakthrough eventually came. Aidan was diagnosed with Cloves Syndrome.
Learning of his condition brought mixed emotions for the family, especially for mum Vikki who found the news tough to take at first.
Hospital visits were a regular thing for Aidan and his family, whether it was Wansbeck General Hospital, Newcastle’s Royal Victoria Infirmary or London’s Great Ormond Street.
In 2013, Aidan underwent major surgery, having 319 grams of fatty tissue removed from his neck and face during a six-hour operation, which left him requiring more than 80 stitches. The surgery improved his quality of life.
By taking away some of the bulk, he was able to hold his head better and his breathing was not as much of a worry as it had been.
Last summer, Aidan enjoyed his first holiday abroad, on the Greek island of Zante. The family trip was paid for by his grandad, Alan Jackowiak, and the youngster enjoyed the sun and the pool.
It made up for a previous disappointment when Aidan and his family were set to go abroad, but had to cancel their plans because of last-minute complications with his health.
More recently, his doting parents were confronted with a tough dilemma – to put Aidan through more surgery, targeting either his back or brain, or to place him on the pioneering trial using the drug sirolimus.
It was a hard call for his parents to make, but they opted to go down the sirolimus route. If it worked, it would have stopped and/or reduced Aidan’s swelling and removed the need for any further risky operations. It was hoped that it would also have treated Aidan’s epilepsy, by reducing overgrowth in his brain.
Aidan regularly attended the Newcastle-based Alan Shearer Centre and enjoyed the therapeutic hydro pool.
The Toon legend, who met Aidan, has sent his condolences to the family after hearing of the youngster’s death.
The former Newcastle United frontman described Aidan as a lovely boy and a pure joy.
The Gazette first told Aidan’s story in May 2013, when his family were still searching for a diagnosis and his courageous battle touched the hearts of our readers.
Paying tribute to Aidan and family, Gazette editor Paul Larkin said: “We at the newspaper have formed a strong bond with the family over the past couple of years and had grown very attached to little Aidan, with his infectious smile and cheeky sense of humour. He touched the hearts of all who met him – he will be sorely missed and never forgotten. Farewell brave boy.
“The number of messages of condolence that have been left has been overwhelming and I’m sure the family really appreciate it and will find comfort in the words at this extremely harrowing time. Aidan really brought out the best in many people in our community as they rallied round to transform the family home to meet his needs.”
Aidan was a much-loved pupil at Alnwick’s Barndale House School. Headteacher Colin Bradshaw paid his respects to a little boy who was popular with both staff and pupils.
He said: “Aidan was a valued member of the school community. He was a vibrant, outgoing, fun and enthusiastic little boy who fully integrated into school life. He was very much the life and soul of the class.”
Mr Bradshaw told the Gazette that the school would like to create a memorial to Aidan in the school grounds. “We would like to remember him, very much so, and we will speak to Karl and Vikki to see how they feel about establishing a memorial for him.”
Aidan’s death has also sparked a huge outpouring of grief among the Cloves Syndrome community. On a Facebook page which has been set up to support those suffering from the rare condition, a message read: ‘It is with heavy hearts we share the following news, Aidan who captured our hearts has passed away. The Cloves Syndrome community sends our love and thoughts to the family’.
Among the responses to the touching message, Sue Durden said: ‘Much sympathy to these parents and the brother. We have one of these little darlings in our family. We would never want to give him up either!’
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 and Karl said the family shed a few tears during the feature.
The family also appeared on ITV’s This Morning programme and papers around the world picked up on his tale.