His brother says you have 'more chance of winning the lottery twice' than havingNicolaides-Baraitser syndrome
A Nottingham man is climbing Mount Kilimanjaro to raise money for the disease his brother suffers with - one of the world's rarest. Wesley Smith's brother Harley, from Newark, was diagnosed with Nicolaides-Baraitser syndrome in 2008, which affects just 270 individuals worldwide.
Wesley said: "It's so rare that some families of people who suffer from it might not even know it is NCBRS. If I can raise money it means the families of those who live with a sufferer can dip into if they need to, so they don't have the struggles that my mum had. I'm really excited for the climb because I love walking. But I'm inspired by the fact that the charity is so little and doesn't have funding.
At this point, a doctor said she believed he had a syndrome. Epileptic seizures started when he was just over a year old. "I was worried and scared and we always thought he was going to die and we'd lose him. To this day if he gets a cold, his organs fail because his immune system doesn't work and he can get really ill so it's still a daily worry. Doctors still don't know loads about it."
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