Im trying to complete a target of taking over one million steps between the start of June and end of Aug . Nothing mind blowing but a lot more steps then normal for my Godson and Nephew Barney to help and improve his life quality.

How do you possibly cope when you're told that your child has a rare brain disorder and will live a very short life, possibly to the age of 2 years old! - this is the devastating news Bev and Andy had to come to terms with after Barney became unwell at 6 months old and started having seizures. After much time in hospital, and every test, x-ray, scan going, he was diagnosed with rare life limiting condition called Lissencephaly. Which literally means smooth brain. He has a structural brain abnormality which can never be fixed with an operation. Barney will always suffer with seizures as part of this condition. He requires anti epileptic drugs and will do his whole life. He has severe global delay and needs help in all aspects of his life. Barney, Bev and Andy have recently had an extension to give him a wet room and lift up to his bedroom. The extension build was all at their own cost, then they received funding for his lift and wet room. This was a huge relief on them all as a family. Barney is now 8 years old! His seizures have recently become more complex and he has needed hospitalization 6 times already this year. He now has an NG tube for feeding and medication and has started a new Ketogenic diet which is extremely complex and requires precision in the preparation of every meal and medication. Bev has had to give up her job to become Barneys full time carer. Her and Andy devote their whole lives to giving Barney everything they can to enable him to live a life to the best of his ability. Their next major purchase is for a wheelchair adapted vehicle. Barney is very heavy and lifting him in and out of the car is becoming a huge challenge. His wheelchair is also no longer meeting his needs and is pointed out as being urgent by medical professionals at every meeting! but the next option of wheelchair is only possible with an adapted vehicle. To get a vehicle that meets his needs requires £10,000 over and above the motability allowance. This will put a huge financial strain on Bev and Andy, whilst they know it is essential for Barney, its not something they can just afford to purchase. Balancing his complex needs whilst considering financial burden is incredibly stressful and upsetting.

Barney is such a smiley happy boy despite everything he has to deal with, you fall in love with him when you meet him!. This is why I would like to raise money for him, to make his life that little bit easier, more comfortable and just to meet his growing needs which are a necessity.