As Rory becomes older, his struggles become more apparent. He struggles to sit upright unaided & the ligaments in his legs are becoming tighter & tighter as a result of growth spurts. There was almost a glimmer of hope when a possible treatment was suggested, known as SDR, but Rory didn’t qualify as the risks outweighed the benefits.

Rory often states he ‘wishes he wasn’t disabled’ or that he ‘could do all the things his brother & older sister Holly can do’.

We are/would like to be an active family, but the wheelchair provided by the NHS just doesn’t allow Rory to have such freedom. Rory now has a baby brother, so it just isn’t possible for us to go for walks or days out together as we need a pushchair:wheelchair. Rory’s school year group recently went on their residential & we were initially told it was something Rory just wouldn’t be able to access, but with the determination of myself & Rory’s class teacher, he got there, meaning a lot of lifting for the adults. Rory finds this ‘embarrassing & undignified’.

As Rory grows into a young man, his equipment needs will be forever changing & none of the equipment is given on the NHS, leaving Rory and us as a family feeling hopeless.

Rory is a joy, full of determination of character & fully deserves to live a full & fulfilled life with minimal obstacles in his way.

Thanks for taking the time to visit my JustGiving page.

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 objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.