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On the 19th January 2016 Albert came into the world. Over the first few hours of his life it became very evident that all was not well. Luckily a very good consultant and team recognised this early and Albert received all the care he required including oxygen and feeding through a tube directly to his stomach. Within 3 weeks Albert was diagnosed with Prader-Willi Syndrome (PWS).

PWS is a rare and complex genetic disorder. Some of the many consequences include poor muscle tone, learning difficulties, incomplete sexual development, emotional instability and social immaturity, late development in every area, short stature and, due to the part of the brain affected, an overwhelming, compulsive and insatiable appetite. PWS sufferers can and have, left unchecked, eaten themselves to death.

Albert is a two and a half now and is coming on really well. He gets regular support from healthcare professionals and he is frequently in hospital. He will require through life care. This level of support and care is possible as Albert was fortunate enough to be born in the UK where the understanding and treatment of PWS is the world leader. Much of this understanding is because of the great work of the only charity in the UK helping people dealing with PWS, Prader-Willi Syndrome Association UK (PWSA UK). PWS does not kill, a lack of understanding in the syndrome and its treatment has done in this country and still does around the world including in Europe and the US.

PWSA UK is a tiny charity that delivers an immeasurable effect. Albert's mum and I will be eternally grateful for their support and I am now a Trustee of the charity. On Sunday 29th July myself, Mark Simpson, Pete McMillan, Anne-Marie Douglas, Liam Wilson, Stu Boswell,  Andy Kewley and Becky Hoare will be cycling in the 100 mile Prudential Ride London supported by Paul Hebbron and Geoff Harvey to raise funds for this great charity. 

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