Story
We are raising money for Bertie Petty, the son of a school friend.
In November 2016, a few days after his second birthday, Bertie Petty 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. His sight will gradually deteriorate until he is blind. Sleep is a major problem and Bertie sometimes only sleeps for a couple of hours a night. His consultant has said that it is possible that he may not sleep at night at all in the future. Bertie often has to be fed through a gastrostomy tube in his stomach as he is loosing the ability to swallow. He has numerous epileptic seizures every day and needs 24-hour care.
Bertie's parents have been told that there is no cure and that their beautiful boy will very sadly die in childhood.
Bertie's family are having to move into a more suitable house, as he now has to use a wheelchair and needs a ground floor bedroom adapted to his needs, a wetroom/bathroom so that he is able to be bathed 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 parents have found a good house which has a lot of ground floor space but it will be expensive to transform – this life changing space will cost an anticipated £100,000. Funds are also needed 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.
£100,000 sounds like a huge fundraising target, but with the 25% gift aid from a charity partner Tree of Hope, it is just 300 people raising £300 each. Each of the 300 people will either go on a marathon bike ride or a half marathon walk, finishing up with a family BBQ in the sunshine on 9th July 2017.
Ant and I are each one of Bertie’s 300 and we will be walking for Bertie.
Please please if you can spare it, donate to this very worthy cause. The money we raise will make a huge difference to Bertie and his family. If you are also raising money for Bertie's 300, we will also donate on your page.
Thank you.
Charlie and Ant xxx