The operation Alfie needs which is vital for Alfie if he's got any chance in becoming independent is called Selective Dorsal Rhizotomy (sdr). This operation is life changing because it's Alfie's only hope in being given the chance to walk unaided. Without this operation Alfie will never be able to do everyday things that we all take for granted, such as ; brushing teeth, getting undressed/dressed, and even walking and may lead to Alfie becoming wheelchair bound without this operation. SDR surgery is an aggressive procedure that takes away the muscle spasticity caused by abnormal communication in the brain, spines nerves and muscles(due to part of the brain being damaged). This is the only surgery that permanently reduces spasticity in the body. SDR is recommended in severe cases when other treatments have failed to make an impact.
The procedure requires the surgeon to pinpoint which nerves in the lower back of spine are causing the movement issues then cuts them stopping all spasticity. This helps stop so many other issues such as muscle shortening too which will undoubtedly also stop Alfie from been able to not just walk but move too leading him to be wheelchair bound and in constant pain. SDR takes away the problems therefore leaving Alfies muscles in a better condition to be able to work and build on his muscles correctly. The SDR also helps reduces any deformities that could happen due to having so much spasticity in the legs. If Alfie where to have any muscle/bone deformities this could scupper any goals of Alfie from becoming independent leaving him wheelchair bound also. By having the operation this will also allow Alfie to become independent and been able to join in with other peers with activities such as hopping, football, walking too. Therefore it's important Alfie receives this major operation so Alfie doesn't end up wheelchair bound and can fulfil his dreams of been able to play football in the school yard with his other peers rather than sat watching from the side lines in his wheelchair, for Alfie to be able to take part in sports day and feel like he isn't letting his fellow peers and younger brother down because he can't join in properly. SDR improves people's lives by improving their sitting, standing, balance, reducing any deformities in tendons, muscles, feet and hips. It also stops voluntary movement spams from occurring and the main one helps a child to be able to walk I unaided!
It has also came to light that some parents have stated the surgery has improved their child's arms too in which Alfie has cerebral palsy in his too. This has helped to improve children's handling and lifting, handing writing, drawing and also toileting. Having SDR will massive help Alfie to become toilet trained as at 9 years old it really isn't pleasant for him to be still in nappies emotionally or hygienically for him.
The recovery frame that SDR requires is intensive physiotherapy to relearn muscle control +movement.
Everyday Alfie wakes up at 6am, has muscle medicine called Baclofen and undergoes an hour of physiotherapy/exercises, followed by some hamstring stretching in two pieces of his equipment. During the morning Alfie has to really think about his positioning before he moves around (he does this by bunny hopping or half kneeling at 9years old) to be able to use his arms or legs because of the messages his brain sends to his muscles. Alfie will also use a standing frame and Kay-walker all before lunch as well as squeeze in schooling and all other things children like/tend to do. By the afternoon Alfie will do a second round of Physio and has more baclofen. After school after takes part in swimming which he is trying to learn how to do but it's coming with great difficulty due to the spasticity stopping this from happening. He does this 3x a week which is also part Physio to really help him work his muscles and strengthen them up. Alfie will do a 3rd round of Physio before bedtime which takes about an hour to do. Alfie will also sleep in his splints and gaitors to help keep his legs straight as possible which is very uncomfortable for him! Imagine been laid in bed and your legs and feet are positioned so you can't bend or move them. This is what Alfie does on a daily basis first before he can be a regular child doing what he likes to do. These exercises are switched up and changed to help his muscles in hamstrings, calfs, quads, adductors, abductors legs, stomach/trunk, hips, ankles and shoulders everyday. All muscles need to be worked on daily to try and maintain a suitable level so Alfie can still have surgery. If Alfie deteriorates then there's a possibility Alfie will not be a candidate for the surgery any longer so it is vital for Alfie to keep working very hard before surgery as well as after surgery for a period of time to be able to build his muscles to the correct stage so he can learn to walk unaided.
SDR will be a life changing miracle for Alfie because the spasticity will be gone leaving Alfie to walk smoother+straighter(no crouched position) with heel-toe motion (instead of striking the floor with toes first) no longer leaning to one side, both legs even. Over a period of time by building Alfies muscles up correctly. The more work Alfie puts in the more he is able to do after surgery by himself. This will lead to him being independent, pain free and to be able to live a normal as possible life like all children should be given.
Thank you for taking an interest in Alfie and helping us raise his profile and raise the money we need for this life changing operation.