Washington To Winchester Walk For Bertie
We’re attempting to walk 53 miles of the South Downs Way in 24 hours, to help raise funds for Bertie via the Tree of Hope charity.
In November 2016, a few days after his second birthday, Steve and Ziad’s nephew Bertie was diagnosed with Infantile Batten Disease, a devastating neurological degenerative illness.
From the age of three Bertie will be left completely dependent, unable to play, feed himself, sit independently or communicate. Bertie’s sight will gradually deteriorate until he is blind. Sleep is already a major problem and Bertie sometimes only sleeps for a couple of hours a night. Bertie’s consultant said it is possible that he may not sleep at night at all in the future. He often has to be fed through a gastrostomy tube in his stomach as he is losing the ability to swallow. He has numerous epileptic seizures every day and needs 24-hour care.
We have been told that there is no cure and that Bertie will very sadly die in childhood. Bertie’s family are having to move into a more suitable house, as Bertie now has to use a wheelchair and needs a ground floor bedroom adapted to his needs, a wetroom/ bathroom so that they are able to bathe him using hoists and specialist bath equipment, a sensory room which will help to stimulate him with specialist sensory toys, space for the different carers who come and help look after Bertie and storage for all his feeds and equipment, as well as access into and around the house and into the garden. Bertie’s family have found a house with suitable ground floor space, but it will be expensive to transform – these life changing modifications will cost an anticipated £100,000. Funds may also be used to pay for Bertie’s care, specialist equipment and anything that will make life easier and more accessible for Bertie and those who care for him.
If you are able to donate this really will make a big difference to Bertie, and help his family ensure that he can have the best possible quality of life for the short time he has left.
Myself, Ziad Wattar and Dave Norcott will be attempting to walk the 53+ miles from Washington in West Sussex to Winchester along the South Downs Way, non-stop day and night over an estimated 24 hours. This would be hard enough in any circumstances, but we’re also going to try and do it unsupported, carrying our supplies with us and topping up with water where we can along the way.
We will regularly update our Facebook page where you’ll be able to follow our training, and hopefully our progress on the walk itself in real-time!
Bertie’s 300 and the Tree of Hope
We’re doing this as part of Bertie’s 300, a group which has been set up by his friends and family with a goal of raising £100,000. This sounds like a huge fundraising target, but with the gift aid we receive from our charity partner Tree of Hope, it is just 300 people raising £300 each.
The Tree of Hope is a charity focused on raising & managing funds for medical treatment, therapy & equipment for sick & disabled children. 7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover their core operating costs.