Aidan : The rarest boy in the world.

This documentary is about Aidan, a boy born with a very rare genetic condition which has created huge growths on his bones as well as in his brain. The programme follows Aidan and his parents over a number of years beginning when Aidan was two and a half and had has his first surgery to remove some of the largest growths on his head and face; at this time his parents are also finally given a diagnosis for his condition: CLOVES Syndrome [congenital lipomatous overgrowth vascular epidermal scoliosis]. The condition is so rare that it has only been diagnosed 130 people worldwide and has only been known about since 2006. There is no known cure for CLOVES and it is progressive; facts that are difficult for Aidan's parents to come to terms with. We meet Aidan again aged four as he and his parents travel to America to meet other CLOVES sufferers and their families. After they return home, Aidan meets Dr Ahmad Alomari, the doctor who first discovered CLOVES in 2006. He is keen to remove the growth from Aidan's spine which he believes is taking many of the nutrients from Aidan's food, leaving him severely malnourished. There is also a possibility that he will need to have brain surgery. In 2015, Aidan is invited to Addenbrook's Hospital in Cambridge where a trial of the drug Sirolimus is underway to see if it might turn off the growth signals in unwanted tissue. Wellcome Fellow, Dr Robert Semple, describes the effects of the drug and the importance of the drug trial. Aidan's parents are left with the decision - surgery or drugs? They opt for the drug trial but tragically Aidan contracted a chest infection and died, aged four and a half, before they could begin the trial.