Chris Ward and Gethin Evans are running a marathon in the early hours of 21 June 2021 in order to get to their desks by 9AM, in memory of Fleur Tobutt to mark the year which would have been her 21st birthday.
Fleur had an extremely rare and life limiting condition called Progeria. This is the condition where the child ages rapidly and Fleur was the youngest child to ever be diagnosed. Sadly, Fleur passed away just before her third birthday.
Fleur touched many people in her short life. An ITV documentary was made of her which was watched by 4 million people on the night it was aired. The documentary went on to be nominated for awards and was distributed to 14 countries around the World. Fleur also made appearances on GMTV and ‘This Morning’ as well as being featured in many national publications. The public response to Fleur was extraordinary. After the release of the documentary over 500 letters were sent to Fleur from people of all ages, mostly just addressed to ‘Fleur, Bedfordshire’. The documentary is available on Youtube "Fleur's Story".
Fleur's family have always been extremely thankful for the support and respite that we received from Keech Hospice Care in Luton during and after Fleur's life. This hospice provides a service to children and their families across Milton Keynes, Bedfordshire and Hertfordshire. Keech Cottage relies on charitable donations to function and despite the name ‘hospice’ is a place where Fleur's family have many happy memories of fun times and life lived to the full.