Aidan Jackoviak Smith was born prematurely with a growth on his face
and at 3-weeks-old he started to suffer regular fits that left him brain
damaged
Doctors remain unable to diagnose him but hope to work out what is wrong with him by a process of elimination
They now suspect he suffers with CLOVES Syndrome, a rare condition that causes blood vessel, skin and spinal abnormalities
A
two-year-old boy who suffers with a severe facial deformity and may
never learn to walk or talk has baffled doctors with his undiagnosable
condition.
Despite suffering with a number of distinct symptoms,
medical experts are unable to pinpoint exactly what is wrong with Aidan
Jackoviak Smith.
His mother, Vikki, 40, says that specialists are
now forced to work out what is wrong with him by a process of
elimination as test after test comes back negative.
At first they thought it was Proteus Syndrome, but after a biopsy six
months ago, the results came back negative,’ Vikki told ITV’s This
Morning. ‘But now they think it might be CLOVES syndrome.’
Proteus Syndrome is a genetic condition that John Merrick, the Elephant Man, suffered from.
CLOVES Syndrome is also a genetic condition and causes blood vessel, skin and spinal abnormalities.
Aidan was born eight weeks prematurely weighing 4lb 10oz on Boxing day 2010 after an uneventful pregnancy.
He was immediately whisked away by nurses at Newcastle’s Royal Victoria Infirmary because he was premature.
Vikki and husband Karl, 35, had no idea that their newborn son was in fact very ill with a rare condition.
Aidan had been born with a growth on his face, back and leg and three weeks later he started to experience
seizures with alarming regularity. Doctor then broke the news that he had suffered brain damage.
‘That’s when it hit home,’ said father Karl. ‘The enormity of it hit me when the words ‘brain damage’ were mentioned.
'We realised he might never walk or talk and were worried he would never recognise us. It’s just terrifying.’
The
parents, who also have a son called Daniel from Vikki's previous
marriage, were also overwhelmed when doctors gave them CPR lessons in
case Aidan stopped breathing.
‘You suddenly realise the responsibility of the little life you are looking after,’ explained Karl.


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