Four-year-old boy has died from a genetic disorder so rare
fewer than 130 cases have been identified worldwide, Alnwick, Northumberland,
England, Aidan Jackowiak Smith suffered from Cloves Syndrome which affects one
in 50 million people and has no known cure.
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He was born with
growths covering large areas of his body and suffered from brain damage and
epileptic fits. The little boy suffered from a severe form of the disease but
his parents Karl Smith, 41 and Vikki Jackowiak, 37, were told there was no
reason why he should have a low life expectancy.
As a baby, he had to undergo major surgery to remove a mass
of fatty tissue in his face and neck which made it hard for him to breathe and
swallow. Aidan was due to start a a pioneering drugs trial in July that it was
hoped could make further surgery unnecessary. His family together with
developed had their home specially adapted for the boy.
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