Rhys' SDR Fund
Donation protected
Hi all!
Our little miracle, Rhys Alary Stephens, was born on 17th May 2009. He arrived nine weeks early due to undiagnosed vasa praevia and required 24 minutes of resuscitation to bring him back to us. As a result of this, oxygen starvation has left Rhys with a number of health issues – most noticeably, Spastic Diplegic Cerebral Palsy.
Cerebral Palsy is a condition that affects muscle control and movement. The spasticity means Rhys’ muscle tone is tight and stiff, causing a decrease in range of movement, and also causes pain. As Rhys grows his muscles will become tighter, making walking more and more difficult.
Rhys currently uses a walker for stability and safety when outside in the school playground and has a wheelchair for longer distances. He also wears AFO leg braces but despite these, his muscles are already so tight he is unable to walk with his heels down. This in turn affects his balance and he often falls.
Rhys was recently assessed by neurosurgeons at Nottingham QMC Hospital for Selective Dorsal Rhizotomy (SDR) and we were told he is an ideal candidate for benefiting from the procedure. SDR is a surgical procedure that involves dividing and cutting some of the nerves in the spinal cord that contribute to spasticity in the lower limbs. However, this is not available with NHS funding.
We need to raise £10,000 for the operation itself, and then more still for the ongoing intensive physiotherapy that Rhys would need for several years afterwards.
We aim to fund as much as we can ourselves but we need your help.
Rhys’ original prognosis a few weeks after birth was that he would be wheelchair bound for life. In his short seven years so far, he has overcome so much – three weeks in NICU, five weeks in Special Care; two eye correction operations; two rounds of Botox in his legs (a temporary treatment for the spasticity which did not prove too successful); he also has a PEG feeding tube to help his weight gain, and has poor kidney function that will also require a transplant within the next five years (but we'll cross that bridge when we come to it!).
Despite all this, he tries so hard to keep a smile on his face, working hard at school and doing his daily physio to keep as much movement has he can for as long as he can. He has a lovely bunch of supportive friends and would love to be able to keep up with them in the playground and on days out.
Please help us get the SDR operation he needs to keep him walking for many years to come.
Any help at all would be hugely appreciated.
Thank you.
Our little miracle, Rhys Alary Stephens, was born on 17th May 2009. He arrived nine weeks early due to undiagnosed vasa praevia and required 24 minutes of resuscitation to bring him back to us. As a result of this, oxygen starvation has left Rhys with a number of health issues – most noticeably, Spastic Diplegic Cerebral Palsy.
Cerebral Palsy is a condition that affects muscle control and movement. The spasticity means Rhys’ muscle tone is tight and stiff, causing a decrease in range of movement, and also causes pain. As Rhys grows his muscles will become tighter, making walking more and more difficult.
Rhys currently uses a walker for stability and safety when outside in the school playground and has a wheelchair for longer distances. He also wears AFO leg braces but despite these, his muscles are already so tight he is unable to walk with his heels down. This in turn affects his balance and he often falls.
Rhys was recently assessed by neurosurgeons at Nottingham QMC Hospital for Selective Dorsal Rhizotomy (SDR) and we were told he is an ideal candidate for benefiting from the procedure. SDR is a surgical procedure that involves dividing and cutting some of the nerves in the spinal cord that contribute to spasticity in the lower limbs. However, this is not available with NHS funding.
We need to raise £10,000 for the operation itself, and then more still for the ongoing intensive physiotherapy that Rhys would need for several years afterwards.
We aim to fund as much as we can ourselves but we need your help.
Rhys’ original prognosis a few weeks after birth was that he would be wheelchair bound for life. In his short seven years so far, he has overcome so much – three weeks in NICU, five weeks in Special Care; two eye correction operations; two rounds of Botox in his legs (a temporary treatment for the spasticity which did not prove too successful); he also has a PEG feeding tube to help his weight gain, and has poor kidney function that will also require a transplant within the next five years (but we'll cross that bridge when we come to it!).
Despite all this, he tries so hard to keep a smile on his face, working hard at school and doing his daily physio to keep as much movement has he can for as long as he can. He has a lovely bunch of supportive friends and would love to be able to keep up with them in the playground and on days out.
Please help us get the SDR operation he needs to keep him walking for many years to come.
Any help at all would be hugely appreciated.
Thank you.
Organizer
Lynsey Gough
Organizer