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Alnwick Cloves Syndrome sufferer Aidan Jackowiak Smith dies aged four Alnwick Cloves Syndrome sufferer Aidan Jackowiak Smith has died aged four following illness 17:38, 3 MAY 2015Updated08:06, 4 MAY 2015Aidan Jackowiak Smith with his parents Karl and Vikki (Photo: If not us films) Get daily updates directly to your inbox+ SubscribeThank you for subscribing! Could not subscribe, try again laterInvalid Email A four year old boy who suffered from a one in 50 million disorder has died.

Aidan Jackowiak Smith, from Alnwick, who had Cloves Syndrome a genetic disorder so rare fewer than 130 cases have been identified worldwide died on Sunday. The youngster was at the severe end of the Cloves Syndrome spectrum, a disease for which there is no known cure. However, his parents Karl Smith and Vikki Jackowiak had been told there was no reason burberry sale outlet legit why he should have a low life expectancy. Aidan was born with lumps and growths covering large areas of his body and suffering from brain damage and epileptic fits. As a baby, he had to undergo major surgery to remove burberry outlet livermore a mass of fatty tissue in his face and neck, which was threatening his ability to breathe and swallow. Aidan's parents travelled to America to meet the specialist who discovered the syndrome. They returned, resigned to him having further surgery either to remove a huge lump on his back or brain surgery to control his epileptic fits. However, Aidan was invited on to a burberry designer clothes pioneering drugs trial that it was hoped could revolutionise his treatment and make further surgery unnecessary, which he was set to begin in July. He was a "very popular" pupil at Alnwick's Barndale House Special School. Vikki and Karl took their son to Great Ormond Street children's hospital, in London, on a regular basis. Aidan's dad gave up his job as manager at a money shop to look after him, while Vikki often had to take unpaid leave from her post as a finance officer at Newcastle City Council to take her son to the capital. Taxi drivers there often gave the family free rides as a good will gesture. The family, completed by Aidan's older brother Daniel, a pupil at Alnwick's Duchess's Community High School, recently had their Alnwick home rebuilt with local tradespeople giving their services for free.

In March, Channel Five broadcast Aidan: The World's Rarest Boy, a documentary, which followed the family's trip to America. The youngster burberry outlet uk had been on a family holiday to a caravan park in Blackpool around three weeks ago when he picked up a chest infection, which developed into the flu and then chronic lung problems. He was admitted to hospital in Blackpool before being transferred to one in Manchester where he had been on a ventilator and where family members had visited.


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