Army of tradesmen rebuild severely disabled Aidan Jackowiak's home for free

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Youngster needed specially fitted home due to extremely rare condition which means he needs a wheelchair
His parents faced huge renovation job to make their new house suitable for the needs of his disability
But, after hearing of their plight, local workers offered their time and work free of charge to help them
After £100,000 worth of work is done to transform the property, parents say 'his laughter now fills house'

Published: 05:40 EST, 9 February 2015 | Updated: 10:56 EST, 9 February 2015

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A family have thanked a band of workers and tradesman who helped adapt their home to allow their disabled son to get around.

Four-year-old Aidan Jackowiak has the extremely rare condition Cloves syndrome which has left him needing a wheelchair and causes him to suffer epileptic fits.

His parents Karl Smith and Vikki Jackowiak have struggled to find a home suited to his needs and feared it would take years to complete the renovations to their house in Alnwick, Northumberland.

But after word of their situation got around, a team of local workers stepped forward to offer them help.

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Aidan Jackowiak - with his mother Vikki, father Karl Smith and brother Daniel - along with the team of tradesmen and women who came forward to help them renovate their home

The family say they were stunned by the generosity of workers, described as 'the sort of thing that restores your faith in human nature'

Electricians, bricklayers and decorators gave up their free time to provide around £100,000 of labour, fittings and fixtures free of charge.

The family had to move out of their previous home because it was too difficult to move little Aidan around.

They purchased a run-down former fire officer's house which was the perfect size, but was in very poor condition.

The back garden was overgrown, the boiler was condemned, the kitchen was in a very poor state and the loft had beetle rot.

Mr Smith was preparing to face the daunting prospect of trying to carry out the necessary improvements himself, but had very little DIY experience.

When locals heard of the family's plight, qualified tradesmen and women began arriving at the front door and offering their help for free.

Some came from 50 miles away to help make the house more disabled-friendly.

Aidan's parents have described the help of locals as 'the sort of thing that restores your faith in human nature'.

'It hurts when people stare': Aidan's parents back in 2013

The family needed alterations to their home in Alnwick, Northumberland to help with Aidan's care, but faced having to do the work themselves

But after tradesmen in the area heard about their plight, they came forward and offered to work weekends to transform the property

The family say the house re-fit has vastly improved Aidan's life and his 'laughter now fills our home'.

They told their local paper, The Northumberland Gazette: 'We are so grateful and there really aren't any words to use to thank people enough.'

The local council meanwhile have fitted a lift and ramp for Aidan.

Gordon Webster, manager of the Alnwick MKM builders’ supply depot, masterminded the re-fit and convinced other workmen to help out.

He said: 'When I saw what this family were going through I thought they really needed a bit of support.'

Aidan was born eight weeks prematurely weighing 4lb 10oz on Boxing Day 2010 after an uneventful pregnancy.

He was born with a growth on his face, back and leg and three weeks later he started to experience seizures with alarming regularity. Doctors then broke the news that he had suffered brain damage.

The former fire officer's home (pictured during the renovation project) needed extensive work when it was bought by the family

When purchased, the property was effectively uninhabitable for any family-of-four, let alone one with a son with Aidan's specific needs

But, using their variety of skills, the group of hard-working volunteers have turned the house into a home for Aidan and his family

The work means the Aidan's parents and brother can continue to support their son while he receives further treatment for his condition

Aidan's condition - which has left him with facial deformities - initially baffled doctors after his birth.

He underwent test after test to try to find out what was the matter with him, but every possible diagnosis came back negative.

It was only when he was two that doctors started to believe he had Cloves syndrome, which affects around only 150 people worldwide.

A RARE CONDITION FOR WHICH THERE IS NO CURE: WHAT IS CLOVES?

Cloves stands for Congenital Lipomatous Overgrowth Vascular Malformations Epidermal Nevis Spinal/Skeletal Anomalies/Scoliosis.

It was discovered in 2006 by Boston doctor Ahmad Alomari. Dr Alomari reviewed decades of data and photos of children who had been given different diagnoses for a specific combination of symptoms.

Although the cases were rare, he noticed a definite pattern when comparing them.

In 2009, Dr Alomari published a paper describing his findings which established Cloves syndrome as a recognised disease.

Aidan's parents went on ITV's This Morning to discuss his then-undiagnosed condition in 2013

There is currently no test for the condition and doctors must rely on recognising the symptoms to make a diagnosis.

Symptoms include skin, limb, torso and spinal abnormalities such as like fatty masses or scoliosis (spinal deformity). There can also be vascular (blood vessel) abnormalities such as a birthmark too.

It is not entirely clear what causes Cloves syndrome but experts have discovered that up to 60 per cent of cells in patients' affected tissues contain mutations in a gene called PIK3CA.

There is no known cure for Cloves but many of the associated problems can be managed or prevented successfully with the right medical and surgical care.