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Rory Tweddle
Rory, now aged 10, was born at 29 weeks along with his twin brother Evan. Prior to birth it was mentioned that Rory had an enlarged ventricle his brain but this was never expanded on.
Shortly after birth in special care Rory suffered an extreme seizure, which may have added to what was spotted before birth, resulting in him having Diplegic Cerebral Palsy.
I noticed at around 6 months that Rory wasn’t hitting his milestones. What followed was a trip to the doctors where I wasn’t taken seriously in any way. He does have an OT & Physio through which we receive minimal help, but it is by no means unappreciated.
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 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 ‘embarrasing & 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.
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