Rorys S.D.R. Operation Funding Page
Donation protected
Hi. My name is Rory, and I'm 12 years old.
I was born with Cerebral Palsy, and as I get older/bigger, I am having more and more problems with my legs. Basically, I don't have a lot of control over them, so they get really stiff and difficult to move which makes it hard for me to travel around in my powered wheelchair as my legs and feet stick out. I have to have them strapped down most of the time for safety and this gets really uncomfortable and painful. The high tone and extension in my legs also makes it really hard for my parents to dress me and get me on the loo etc!
There is an operation that can be done called Selective Dorsal Rhizotomy (SDR) but it isn't very common in this country yet. I have met the wonderful team at Alder Hey Children's hospital and they said I'm a perfect patient for the operation. So recently I have been raising money through this page to help me and my family pay for this procedure as it costs £16,000 because it isn't funded by the NHS. The operation is going to really help my legs and sitting posture/position.
My operation is now booked and paid for (for this summer) because, overwhelmingly we successfully raised the funds within 3 weeks, partly due to incredibly supportive family and friends, and partly due to a challenge I set up with my Dad called 'Rorys Rhizotomy Riff Challenge'. With the help of social media it went semi viral and I received riffs from as far away as Siberia! So with your help we really want to keep this challenge going to now try and raise more money for families who are waiting for the same op but are struggling and haven't been as lucky as us. Some of these families have been trying to raise the funds for months and months and in some cases, years!
You can watch/review/catch up on my progress and how it all happened in previous updates on this site.
Please please please keep the donations coming, it has been amazing so far.
Below is a link to a page from Alder Hey Children's Hospital website, with details about the operation itself, to give you more idea what it's about.
Thanks for reading.
Rory
http://www.alderhey.nhs.uk/departments/neurosurgery/selective-dorsal-rhizotomy-sdr/
I was born with Cerebral Palsy, and as I get older/bigger, I am having more and more problems with my legs. Basically, I don't have a lot of control over them, so they get really stiff and difficult to move which makes it hard for me to travel around in my powered wheelchair as my legs and feet stick out. I have to have them strapped down most of the time for safety and this gets really uncomfortable and painful. The high tone and extension in my legs also makes it really hard for my parents to dress me and get me on the loo etc!
There is an operation that can be done called Selective Dorsal Rhizotomy (SDR) but it isn't very common in this country yet. I have met the wonderful team at Alder Hey Children's hospital and they said I'm a perfect patient for the operation. So recently I have been raising money through this page to help me and my family pay for this procedure as it costs £16,000 because it isn't funded by the NHS. The operation is going to really help my legs and sitting posture/position.
My operation is now booked and paid for (for this summer) because, overwhelmingly we successfully raised the funds within 3 weeks, partly due to incredibly supportive family and friends, and partly due to a challenge I set up with my Dad called 'Rorys Rhizotomy Riff Challenge'. With the help of social media it went semi viral and I received riffs from as far away as Siberia! So with your help we really want to keep this challenge going to now try and raise more money for families who are waiting for the same op but are struggling and haven't been as lucky as us. Some of these families have been trying to raise the funds for months and months and in some cases, years!
You can watch/review/catch up on my progress and how it all happened in previous updates on this site.
Please please please keep the donations coming, it has been amazing so far.
Below is a link to a page from Alder Hey Children's Hospital website, with details about the operation itself, to give you more idea what it's about.
Thanks for reading.
Rory
http://www.alderhey.nhs.uk/departments/neurosurgery/selective-dorsal-rhizotomy-sdr/
Organizer
Chris Pilkington
Organizer
