Can you support us?

Donate to Tree of Hope today

Can you support us?

Donate to Tree of Hope today

Bertie

In November 2016, a few days after his second birthday, our son Bertie was diagnosed with Infantile Batten Disease, a devastating neurological degenerative illness. From the age of three our son 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 told us that 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 loosing 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 our beautiful Bertie will very sadly die in childhood.

We 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 we 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. 

We 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.

If you would like to donate to Bertie's JustGiving page we would be so grateful, this really will make a big difference to Bertie so that he can have the best quality of life for the short life he will have.


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 our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.

Request Removal

Request a callback

Fields marked with an * are required

Fields marked with an * are required