Since their son, Aiden, was born prematurely with a rare condition that baffled doctors, Karl Smith and Vikki Jackowiak have battled tirelessly to help him.
Aiden, now four, was born with a growth on his face, back and leg and has brain damage that means he can’t walk and talk.
He had test after test to find out what was causing his problems and as a result, he was recently diagnosed with Clove Syndrome.
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Karl Smith and Vikki Jackowiak appeared on This Morning with their son, Aiden, who has Clove Syndrome
The condition was only discovered in 2011 and just 150 people have been diagnosed with it so far.
Aiden’s mother, Vikki, 40, from Alnwick, Northumberland, said the diagnosis was both a blessing and a curse – as it has dashed her hopes of one day finding a cure for her son.
‘Once we got the diagnosis we looked it up on the internet and saw there was no cure which was disheartening. I always hoped diagnosis would lead to cure, an operation he could have,’ she said on today’s This Morning.
Clove stands for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis.
Aiden’s condition causes facial deformity due to the accumulation of fatty masses
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.
Aiden’s father explained how it doesn’t always affect people in the same way and Aiden is a particularly bad case.
He said: ‘There’s no two children the same with Cloves. He’s higher end of spectrum, he can’t walk and talk like some others with it can.’
The parents admitted that the diagnosis has brought them some comfort as they have been able to meet other families going through the same thing they are.
The little boy has a great relationship with his older brother, Daniel, pictured right
Vikki and Karl had to see numerous doctors before Aiden was finally diagnosed
Karl, 35, said: ‘It’s an emotional journey, even though you have your family, meeting others is nice to have that rapport and discuss how you’re feeling and how they are going through the same emotions as we are.’
The couple, who also have a son, Daniel, 13, will share what life is like for the family in a Channel 5 documentary that airs tomorrow evening called Aidan: The Rarest Boy in the World.
Vikki admitted there is always a new issue to deal with as so much is unknown about Cloves but now they have a diagnosis, they can try and give Aiden the best life they can and manage his symptoms.
The family share their story in a Channel 5 documentary this week
The parents are striving to give Aiden the best life they can
For example, he’s had operations to remove excess fat from his face and neck and could have back surgery in the future.
He could also become a test subject for a study being carried out at Cambridge University for a drug trial that could reduce some of the lumps he has and slow down the swelling.
In the meantime, the parents said Aiden has started at school four mornings a week – which he loves.
‘He has come on leaps and bounds,’ Vikki said.
She added that he has a great relationship with his older brother who is understanding about how much attention his sibling receives.
She said: ‘Aiden takes a lot of our time and we’re often at hospitals. It’s tough on Daniel but we have to make the best of it.’
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