It was the longest six hours,” recall the parents of little Aidan Jackowiak Smith, as they reflect on their brave son’s most recent operation.
Aged just two at the time, the Shilbottle tot endured lengthy surgery at London’s Great Ormond Street Hospital to reduce severe swelling to his face and neck.
Six hours and more than 80 stitches later, medical staff had removed 319 grams of fat from the areas.
Emotionally, it took its toll on the youngster. But now, months on from the operation in October, three-year-old Aidan is back to himself. His giggle and infectious personality has returned. The old Aidan is back.
Most importantly though, it has made a difference to Aidan’s quality of life.
“He can do a lot more and can hold his head a lot better,” says his dad Karl Smith, 36.
“The operation took away some of the bulk and his breathing isn’t as much of a worry.”
It was the beginning of May 2013 when the Gazette first told the tale of this little fighter, described by his loving parents, Vikki Jackowiak, 41, and Karl, as a miracle child.
Only after Aidan’s birth did his mum and dad notice that there was something different about him.
He had swelling to his face, neck and ear, and then developed swelling on his back. One foot was much larger than the other and their baby, who was born two months’ premature on Boxing Day 2010, was also suffering seizures.
Up until the end of last year, despite numerous tests and appointments with specialists, medical experts still couldn’t put their finger on his health problems.
But now the family has been given a diagnosis.
The brave tot has a severe form of Cloves syndrome, which is a recently-discovered and complex ‘overgrowth syndrome’.
Incredibly, it has only been diagnosed in around 130 people worldwide.
But learning of his condition had mixed emotions for his family.
Karl said: “I was pleased. It was the next step and it means that we can find out what we can do to help him and his lifestyle and see if there is any kind of medication out there to help him.
“But from what we gather he is the worst kind of scenario. He has got it all down the left side of his body. They think he has got it 10-fold really.”
But for Vikki, learning of the diagnosis sparked a different feeling – although she has accepted it now.
She said: “I had to come to terms with the fact that he wasn’t going to get better and he will be like this.
“I had in my mind that it would be curable and it would just take a few operations and he would be better.”
The family will be trying to put some savings together so that they can attend a special conference in Boston, USA, in 2016, which doctors and researchers of Cloves will be attending. It will give the family a chance to find out more about the disease and treatments available.
There is still a way to go though for Aidan.
He has recently had MRI scans and the family are waiting to find out what surgery will come next. Aidan, who is still on pureed food and thickened juice, has an appointment with a brain consultant in London in July.
“It is just a waiting game,” says Karl.
But with a major operation under his belt and having received a diagnosis, it has certainly been a whirlwind 12 months for Aidan and his family – including his 14-year-old brother Daniel Jackowiak – since first appearing in the Gazette.
His ordeal touched the hearts of our readers and a community fund-raising appeal led to around £11,000 being collected for the family, helping to pay for costly and regular hospital trips, including to Newcastle and London.
Vikki and Karl had to fork out around £1,000 alone to stay a week in basic accommodation in the capital while Aidan was in hospital for his operation last October.
There are other expenses too. Recently, the family received a new car which was big enough for Aidan’s needs, but they had to pay for the modifications to make it suitable for the youngster.
There will also be that trip to Boston for which the family will have to pay.
Vikki and Karl say they are grateful for the support they have received from the local community, both financially and emotionally.
“Their help has been a God-send,” said Karl. “It really does restore your faith in people.”
Vikki added: “We have received so much support, financially and emotionally. We are so grateful.”
Interest in Aidan’s plight has extended further than north Northumberland.
Last summer, the family appeared on ITV’s This Morning programme. Papers around the world have picked up on his story and Aidan has been the focus of a documentary by Brighton-based Electric Sky Productions, which has attracted worldwide interest, with a host of countries clamouring to air it.
“It’s been an emotional rollercoaster,” says Karl, reflecting on the last year.
Aidan goes to Barndale House School, in Alnwick, three afternoons a week. The family cannot speak highly enough of the school and the children there.
“He is doing great there,” said Karl. “He loves the kids and they love him. One of Aidan’s friends from Barndale invited him to his first school birthday party.”
At the time of the appeal, a special account, entitled the Aidan Smith Fund, was opened at the Alnwick branch of the Yorkshire Building Society, and people can still make a donation to the family. Alternatively, call Dave Paul at Northern Eye Media on 07831 237093.