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. Bertie’s 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. Bertie's consultant has said that it is possible that he may not sleep at night at all in the future. He often must 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 this beautiful boy will very sadly die in childhood.
Bertie's parents 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.
They 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 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.
Bertie's 300 has been set up by his friends and family with the target of raising this money. For more information please click here.