He may only be two years old, but little Aidan Jackowiak Smith has gone through more than most people can even imagine.
But as his father Karl Smith blows a raspberry on his cheek at the family’s Shilbottle home, this brave youngster lets out a giggle and a shriek of laughter.
That’s Aidan all over. He is very much a happy child, no matter what life has thrown at him.
In the words of his family, he is a little fighter. He’s a miracle child. He’s unique.
It wasn’t until after Aidan was born that mum Vikki Jackowiak and dad Karl 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 on December 26, 2010, was also suffering seizures.
But just over two years down the line, and after numerous tests and appointments with specialists, medical experts still can’t put their finger on his health problems.
“It is complex,” admits Vikki, 40. “We have been told that he is so unique that there is not one specific diagnosis for him.
“We have been told it could be CLOVES Syndrome (a rare condition and a recently described overgrowth syndrome with complex vascular anomalies), but nothing has been confirmed.
“We don’t know what will happen and we don’t know how he will develop.
“We take it day-by-day.”
Amazingly, nothing was picked up at the 20-week scan.
“We were told everything was fine,” added Vikki.
Life has been tough for Aidan and his family.
Hospital visits are a regular thing, whether it be the Wansbeck General Hospital, Newcastle’s Royal Victoria Infirmary or London’s Great Ormond Street.
Aidan, who also suffers epilepsy, is on a regular cocktail of medicine and has been using a CPAP (continuous positive airway pressure) machine.
He has an army of consultants, advising on different aspects of his body.
And he is soon to undergo important surgery at Great Ormond Street.
The youngster currently eats puréed food, but in around six weeks’ time he is due to have a PEG (Percutaneous Endoscopic Gastroscopy) fitted to help him increase his intake of much-needed calories.
Then, at the end of the summer, he is due for a major operation to reduce the swelling on his face.
Future surgery is expected.
“He has been through so much already, but he is so happy. I don’t know how he does it to be honest,” said Karl, 35.
“He is a bit of a miracle child. He is a little fighter and he has got more strength than people give him credit for.”
Aidan’s health problems have impacted his development.
Karl said: “He is not a normal two-and-a-half year old.
“He can’t hold the weight of his head, he can’t toddle, he can’t put pressure on his legs.
“We don’t know if he will be able to walk.
“He is just like a baby to be honest. He is doing things that a six to nine-month-old could do. He is just starting to grip toys.”
Sadly, his parents admit that Aidan does receive some funny looks from passers by, especially when he is down in London.
They admit, though, that the north Northumberland community has been fantastic and Aidan is somewhat of a little celebrity.
“You do expect glances but it can be difficult when people stare. It can be blatant,” said Karl.
With Aidan needing constant care, things have been tough for his family, including financing the huge amount of travelling to get him to his many appointments.
The family does receive respite care, but does not get funding towards his constant care and regular travel.
Karl said: “It has had a massive impact. I have given up my job to become a full-time carer for Aidan.
“We want to do the best for him, but with the financial impact of this and the cost of travel to his many appointments, as well as purchasing equipment for him, we are finding it is becoming increasingly difficult to afford what he needs.”
However, the community has rallied to support Aidan and his family.
A Hallowe’en fund-raising event was held at Alnwick Working Men’s Club last year, collecting more than £2,000.
This helped support Aidan’s needs for the next few months. Further activities are planned this year to collect funds to support Aidan’s forthcoming trips to Great Ormond Street for surgery.
The Alnwick branch of the Yorkshire Building Society is backing the cause while a separate live music event is planned at the working men’s club at the beginning of June.
Vikki and Karl admit they are overwhelmed and touched by the support.
“It is amazing and we are really grateful,” said Vikki.
“Aidan is a special little boy and the support we receive shows just how many special people he has around him.
“We couldn’t ask for a nicer community.
“We are doing this for him to get better. We go down to the RVI, to Great Ormond Street and the Wansbeck.
“We never benefit from anything that has been given to Aidan.
“Our family and friends have been brilliant, but there is only so much that they can do.”
One of Aidan’s rocks is his caring older brother Daniel Jackowiak, aged 13.
“It is a lot for Daniel to deal with, but he dotes on Aidan and he sits and plays with him,” said Vikki.
FUND-RAISING FOR AIDAN
A signed Newcastle United shirt, Dolce and Gabbana perfume and autographed goalkeeping gloves – these are just some of the raffle prizes up for grabs as part of a special fund-raising bid for Aidan.
The Alnwick branch of the Yorkshire Building Society has thrown its support behind the cause after learning of the youngster’s plight.
Staff at the Bondgate Within-based office are planning a series of fund-raising activities, which includes the raffle, as well as a fun run and a woodland walk.
It is hoped the events will collect funds through donations, ticket sales and sponsorship.
Louise Watson, from the Alnwick branch, said: “When we heard about Aidan and his family’s struggle to raise funds the whole branch team put their heads together to try and come up with some fund-raising ideas.
“We plan to organise lots of different events as we all feel very passionate about trying to support a local family who are doing everything they can to get the best treatment for their child.
“We hope lots of people will pop into the branch and help us raise a great amount for the family.”
The Society’s branch team approached a number of local businesses in the area to collect prizes for the upcoming raffle.
Thanks to donations from Newcastle United, local restaurants, shops and goalkeeper Shay Given, the branch has a huge amount of unique items to raffle off.
The raffle prizes will be drawn on May 26 and members of the public can pop into the branch to pick up a ticket for £1 each, with every single penny raised being donated towards Aidan’s cause.
Items up for grabs include a signed Newcastle United top and goalkeeping gloves, as well as gloves from Shay Given, a cut and blow dry voucher from Hair and Sun, Dolce and Gabbana perfume from Beauty Box, and a £25 restaurant voucher from Lilburn’s, among other prizes.
A separate fund-raising event has been planned at Alnwick Working Men’s Club on Saturday, June 1.
The Decades live music session starts at 7.30pm and will feature music from the 50s to the 90s from local bands Before the Mast, Caught in the Act and NE66.
Tickets are £5 and are available from Alnwick’s Thomas Cook branch.