Ben has very, very sadly entered his final phase of life and it’s with a heavy heart that in the near future he will join his little brother Jake.
Ben has been an inspiration and such a strong fighter this past ten years. He has inspired not only his family, but local community and many even further afield. This has been shown by the the endless fundraising, generosity , campaigning and hours of donated time of some very special people who we as a family will always be so thankful too.
Last November was the start of his body becoming tired and extra symptoms coming on board that his neurology team no longer became able to manage alone. A few months ago he became put under the care of a Palliative Consultant and nurse. He had an appointment a little over a month ago which re-confirmed that Ben has now entered ‘the final stage of life’.
Palliative care cannot give an exact timeline, only that he is in the final stage but it means he is now on borrowed time.
Ben himself is sleeping a lot longer, his window of awake time has decreased to overall approximately 6/7 hours a day, he is on very strong anti-nausea medication, he has good days and horrible days.
As you may be aware a purpose built medically equipped house is just complete and almost ready for Ben to move into and live out his final days in the surroundings and comfort he deserves!
Getting him into the Trust house has now become a matter of importance and urgency. Therefore in a final push to get everything complete we are putting up one final fundraiser.
Remember this house keeps on giving and a year after Bens passing the house will pass onto another family or charity in need to keep Ben and Jakes name and memory alive.