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Life changing spinal surgery for cerebral palsy
0% complete
£49,865 raised of £74K
735 donations
*6th October Update*
"6th October is World Cerebral Palsy Day, might try asking again if anyone wants to donate or sharing my fundraiser link because fundraising has pretty much stagnated and I still need to keep raising to be able to carry on with my physio, training, etc so that I can continue to improve little by little. The saying is "it's a marathon not a sprint" but this is more than just a marathon, it's an epic journey which will hopefully lead me to something I've never ever had...
A friend of mine also bought me a ticket for Comic Con Africa and I ended up walking for 6 hours. I managed for the most part, had a small fall right at the end. Think my legs were slowly starting to give up. I don't have that endurance strength which will take much longer to obtain, but the good news is that even after all that walking I was not in any pain the next day (apart from my usual nerve pain which we're still trying to find a way to manage) At least it means that I can improve further which is positive news"
*13th September Update*
Yesterday I had a full blown panic attack and today I was able to accomplish something I've not been able to do since before the spinal surgery.
Normally, maybe 90% of the time I don't let fear dictate what I can do but that 10% of the time sometimes the fear is just too strong. Prior to the surgery I would struggle to walk even 100 metres before my legs were in crazy amount of pain. Since the spinal surgery and the heart surgery I'd walk within the safety of the small complex where I live, just in case I fall or something, there are people around. I was afraid of walking alone outside because of the unevenness of the ground and if I fell, "what if I landed on the pacemaker, would I need to be rushed to hospital again" but after that panic attack yesterday, today I just decided to just do it and I walked alone (with one crutch) out into the streets to a nearby shopping centre and back home, 1km in total.
There were couple of stumbles because of how uneven the ground was but I didn't feel like I was at any risk of actually falling.
That is massive for me. Now I know I can manage it on my own and can start to do it more often and try increase the walking distance as well.
Obviously I still have a long way to go but I'm glad I was able to get over that hurdle.
If any of you know of anyone that might be willing to donate, I still need to raise the rest of the funds so that I can continue with my rehabilitation. I'd really appreciate it.
Hugs and love.
*2nd September Update*
This shit is difficult. Plus with an extra 20kg weight added to it. Push it to failure. Not just the lower body that needs work. Upper body as well. It's even extra difficult because my left arm can't completely straighten. I was also thinking that even though I didn't know I had cerebral palsy until very recently and yes it's not great but at the same time maybe knowing from a young age that I had cerebral palsy might have limited me. Growing up I played football, cricket and even tennis. Maybe had I known I might not have pushed myself to playing these sports. I mean when I was a kid walking home from school with couple friends we'd be kicking a coke can all the way for about 1km. My dad hated it because my shoes would be worn off and couple times I'd be bloodied up from few falls on the gravel but it didn't stop me.
Not sure I'd be able to play any of these sports again, even as just a hobby. But who knows, maybe...
*30th August Update*
Trying to load weight with some of the exercises is a massive challenge. My bio-kineticist said that the lunges going up the ramp are twice as good as they were a month ago. It's probably one of the quickest improvements I've seen, though I still have a long way to go as balance is still an issue because of my lack of strength. Nerve pain has been a lot more this last couple of weeks and even doubling dose of meds doesn't help. That's something I have to fight through constantly.
Was speaking to someone the other day and were telling me what a risk is was for me with my disability to go to a foreign country alone to get spinal surgery. Sometimes I forget that it was such a crazy risk. All I ever thought was that I had to do whatever it takes to try and improve my rapidly declining physicality, even if it only ends up being like a 10% improvement for me, that's literally life changing in the most positive way. Was also told that there were those close to me that weren't supportive of me getting this surgery. I always knew but end of the day it's difficult for people to understand just how difficult things are for someone with Cerebral Palsy, who physically was getting worse. They can't understand what it's like having to fight your own body every single day.
Yes it was a massive risk but without taking that risk I would not have found out that I had a severe heart issue and that I could have literally dropped dead at any moment. And even though I'm still in pain all the time as a result of the surgery, I have no regrets. The small improvements that I have already seen give me hope of what I may be able to achieve.
Plenty people have doubted me all my life. That's just the way life goes sometimes.
Hope and fight is all I have really.
*23rd August 2026 Update*
I could never do this before so it's quite challenging. Especially with having Cerebral Palsy, being able to make quick/fast movements is very difficult because the signal from the damaged part of the brain to the legs is not always the right signal and definitely never quick. I'm hoping it's something that I can learn with continuous intensive therapy, but I think it might take a long time to be able to even try re-training the brain.
I received an amazing comment the other day on one of my videos from someone I don't know which gave me a bit of a different perspective.
What he said was:
"Olasunkanmi Adeniyi
What stood out to me was your answer.
"Striving for perfection" sounds like chasing an impossible goal, but I think what you're really pursuing is your highest possible potential. That's a different mindset.
The people who achieve extraordinary recoveries are rarely the ones with the easiest journey. They're often the ones who decide that yesterday doesn't get to define tomorrow.
Your physio saw the outcome. Today he finally understood the cost behind it.
Thank you for sharing that part of your story. Posts like this remind us that resilience is usually invisible until someone chooses to talk about it.
Wishing you continued strength. I'm looking forward to the day you look back and realize you've already achieved what once felt impossible."
I've had a hellish journey so I hope he turns out to be right and that I manage to achieve some sort of extraordinary recoveries. I know from my end I have to keep working and fighting to stand even a chance of achieving any of the goals I set for myself, small and large.
*11th August 2026 Update*
Not the most exciting video. Core strengthening. Prior to my surgery I could not raise my legs off the ground at all. So this quite a significant improvement, even if I'm not entirely happy with it. I am trying not to be so hard on myself but that in itself is a tough challenge also because subconsciously without even realising it I already feel it's not good enough, even though logically I know it is because I've come pretty far and the journey still has some way to go.
*3rd August 2026 Update*
Today was actually the first time I've ever told anyone about everything that happened to me pre and post surgery. And when I told him about it all, it shocked him, he couldn't believe it. He was trying to understand it but couldn't comprehend how one person could go through all that I've been through. He asked an interesting question. He asked how do I keep going on after everything. I couldn't answer him but after some thought, I realised that I keep going on because I'm striving for perfection. And logically I know it will never perfect, not even close but emotionally I feel like maybe I can maybe be that one person that defies the odds. For better or worse. It's part of what keeps me pushing through all the pain, suffering and challenges.
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*28th July 2026 Update*
You know there are days when you think about how much improvement you've made and you know you have but then you get days that make you realise just how much further you have to go.
Today was one of those days. I know the improvement I've made but today made me realise that the road ahead still has a long long way to go. And it's not a good or bad thing. It's just perspective, that the fight is far from over and there's a lot more challenges to overcome.
It can be very daunting because even though the surgery has allowed me to improve in ways I only imagined, I still have cerebral palsy. The condition is not cured and because of that, I don't know how much more I can improve. Fortunately for me I've always chosen the road less travelled full of obstacles so I am reasonably equipped.
My motivation is not "you can do it" it's more "it's too difficult so I have to push myself harder"
*22nd July 2026 Update*
Unfortunately those aren't pleasure sounds. This was so difficult for me. As far as I have come since the surgery I still have a very long way to go. Was so dizzy after todays session, always trying to push myself further. For better or worse. I am though learning not to be so hard on myself when I'm unable to do something yet, but it's difficult. The thinking part of my brain understands what need to be done but the damaged motor cortex of my brain is constantly fighting against it. The battle against own body is less since the surgery but for example the battle against my own body pre-surgery was say 90% now since the surgery it's probably around 60-70% Still a constant fight but step by step. Day by day. If you still want to help me out I am and always will be super grateful. I still need to raise the rest so that I can continue the fight to improve my quality of life. Hugs and love all round
*15th July Update*
Tried the punching bag for the first time today. Also tried walking up and down a ramp, forward and backwards with weights (forgot to take video of that) The punching is ok, balance still long way to go. Left hamstring and glutes need lot more strengthening. You can see the left leg straightening as I keep punching, the strength is not there yet. It's stronger than before but not yet where it needs to be. One step at a time. https://www.youtube.com/shorts/d9aNSDB3YeM
*14th July 2026 Update*
I went for my first annual heart/pacemaker checkup.
I have two leads with the pacemaker one to the atrium and one to the ventricle. They found that because of my cerebral palsy the ventricle is using up more of the battery so they changed some of the settings to try and make it last longer. Least we know I won't be dying of heart failure any time soon.
*6th July 2026 Update*
Some of my muscles have been pretty dormant for at least a couple of decades, especially the smaller glute muscles and today on the Lokomat I actually felt those muscles starting to activate for the first time. Gives a bit of an indication of just how long the rehabilitation might take for me. But, step by step, day by day...
*3rd July 2026 Update*
So I went to Mediatech Expo with work folk yesterday and I walked it all, every single hall, up and down three flights of stairs multiple times and I knew today I was going to be broken. In the last few years prior to the surgery my regression was so bad that walking this amount would take me sometimes 2 days to recover from it but today I feel absolutely fine. No aches or new pains, no muscle spasms, no back ache, nothing. I'm good to go. Normally I have a lot of small improvements but this I'd consider a massive improvement. Makes for a much better Friday. Though unfortunately I still need to raise the rest of the funds so that I can continue with all my rehabilitation. So if you can. I'd really appreciate it.
*17th June 2026 Update*
Balancing on the wobble board without holding. At physio today they told me that my brain seems to be working differently to others. Normally people's body can go further but it's the brain holding them back. With me it's the opposite. I know how far I need to push but my body can't go as far as I want it to. It's both a positive and negative. Positive in the sense that I'm constantly trying to push myself further and not settling but negative in that I'm too over critical and get angry with myself when I can't do something. I am trying to be kinder to myself but not the easiest thing to do. I still am trying to raise the rest of the funds so that I can keep pushing myself to achieve more. You all know the drill by now if you want to donate. Hugs and love ❤️
*2nd June 2026 Update*
Received one of the most interesting and maybe best compliments ever today.
My physiotherapist told me that he's so glad that I'm his patient because there are so many imbalances in my body, accumulated over the last few decades that doing physio with me is making him a better physiotherapist because he's learning so much more. I've never had someone be grateful that my body is a broken mess, definitely a first and While we won't be able to fix all the imbalances the goal is to improve them to help give me a better quality of life. That, combined with also my own knowledge on how to work on these imbalances because I generally go down a rabbit hole in researching anatomy, exercises, gait pattern, what needs strengthening and what needs stretching, etc, that can help me improve. We end up collaborating and learning from each other. There's a good synergy.
Obviously there's still a long way to go. It's not only about doing these exercises but also re-training the brain because there's still a battle between a damaged brain and the body.
While I still need to raise the funds, I haven't really shared the fundraiser much recently because I feel like people are probably sick of me begging. And maybe people aren't but after so many years I tend to feel like people are tired of it.
But here I am embarrassingly asking again. Even if you can share the fundraiser with anyone you feel might be able to give their support.
Thank you. Hugs and Love, always.
*14th May 2026 Update*
I was doing a bit of stretching and mobility work this evening and crouched down to loosen the knee and ankle joints (I have very little mobility in my hips, knees and especially in my ankle joints) and for the first time in my life I was able to balance in that position without holding for 4 seconds at most before losing balance.
I know it's not a lot but for me it's massive. If I can learn to maintain that and maybe over time increase it a little that'd be amazing.
*5th May 2026 Update*
I've been to hell. Would not recommend. But it seems I was just passing through. In the shower the other day I tried to balance on one leg and I managed to balance for 7 seconds. It may not seem like a lot to everyone else but I've never been able to balance for that long on one leg.
A year after the spinal surgery not counting 3 months being laid off after the heart surgery there's some strength been gained. My goal is to balance on each leg for at least 30 seconds. Whether or not I'll be able to only time will tell but for now if I can maintain that 7 seconds I'll be happy.
Hardship is story of my life but to quote Denzel "Ease is a greater threat to progress than hardship"
Absolutely broken from physio today though.
Today he learnt how tough it is for an adult with Cerebral Palsy. We were doing a new exercise and he had to help lifting my legs and he was exhausted afterwards, wondering how I'm able to walk. I told him that my legs were way heavier before the surgery.
He also said I push myself too hard. But I feel I have to. I know there are things that will be impossible for me to do but I have too keep pushing the limits to define what is and isn't possible. If I didn't keep pushing the limits I wouldn't have done and had all the experiences that I've had. Good and bad.
*24th March 2026 Update*
Since it's my birthday today I thought I'd post another video and ask for help again. A lot of people don't understand Cerebral Palsy. It's difficult for able bodied people to understand the constant battle against your own body. There are definitely those who wouldn't understand why I decided to get the spinal surgery especially since there's no cure and the benefits are minimal but what most people don't understand is that minimal benefits for others are life changing benefits for me. It means that I am able to take care of myself better, especially as I am all alone, it means I can walk more than 100 metres without my legs burning. It means that I'd fall less, with less injuries and that alone is worth all the suffering I've been through. I've always hated asking for help but here I am asking for help again. I am almost completely out of funds and I still need to raise the rest of the funds so that I can continue my rehabilitation and get stronger even. You can use the link below or if you click on my profile you'll find the link there. Every donation helps no matter what it is and I am incredibly grateful for all the support I've received so far. I wouldn't have gotten this far without it. Thank you. Hugs and Love always
*18th February 2026 Update*
Took a video today of my walking to gauge how much improvement I've made. My walking is so much better. It's not such an effort to move or to even just bend and lift my leg. I'm not using my entire body just to lift my leg few centimetres. It's not where I want to be yet but I'm pleased with the progress. I still have some way to go to be able to walk consistently with a better gait and that takes time to retrain my brain how to walk, and move and even sit differently than I have been doing for the previous decades. I am also completely out of funds, I don't have enough to get me through the next month, even for food and rent so I desperately need to raise as much as I can to continue with my rehabilitation and keep strengthening muscles that have never really been used for almost 40 years. Please if you can donate I would really appreciate it. Every bit helps no matter how small or large. Hugs and Love ❤️
*30th January 2026 Update*
Started using resistance band on the treadmill (https://youtube.com/shorts/T4G70u-OtG0) . This was before my big fall. Pushing so hard and I didn't give my legs some time to rest, which resulted in my fall. I'm still bruised and cut up on my hand and elbow, and ribs hurt when I move but at least nothing seems to be broken. Been ordered to rest and heal before going back to physio. I still need at least another year of rehabilitation so, as always I would be grateful for any further support. Hugs and Love ❤️
*6th December 2025 Update*
It's been exactly one year now since I've had the spinal surgery. I've been through so much in this past year with unimaginable pain. Praying for death, begging nurses to kill me because of the pain and heart surgery in the middle as well. I've also seen improvement in the way I walk, even though I'm still walking with one crutch I'm walking better than I ever have in my entire life. I still have a long road ahead of me. I still have to activate some muscles that have never been used, I have to still re-learn how to walk, how to move, even sitting in a different manner than I have in the past 40 years. I have at least one more year of intensive rehabilitation to go. My funds are almost finished. I have enough to get me to January but I need to raise the rest so that I can at the least get through the next year of rehabilitation.
I am so grateful to all of you who have and continue to support met. It's not a stretch to say you have saved my life. But now I need even more help. I still need to raise the rest of the funds. IF you are able to donate I would appreciate immensely or even if you can share the fundraiser with someone you feel would be willing to donate, it would help immensely.
Thank you all from the bottom of my heart.
Hugs and Love
*29th June 2025 Update*
Realisation hits in the craziest ways.
Had a bad fall today while walking outside. My first actual fall since my spinal surgery. As I was falling forward I didn't want to land on the pacemaker in my chest because my arm is still in a sling in case the pacemaker got damaged and I ended up in hospital again so I twisted my body to land on my back forgetting that I had spinal surgery and ended up hitting my head on the concrete and bruising my coccyx.
The realisation is that I still have such a long way to in my rehabilitation and with having a pacemaker while having a disability I have to be a lot more wary.
I haven't been able to continuously do fundraising because I'm dealing with so much but again I'm asking for help because I can't do it on my own. Please if you can donate or share the fundraiser with anyone you feel might be able to help so that I have enough to finish my rehabilitation after both surgeries. I would be incredibly grateful.
Thanks for your support ♥
*11th May 2025 update*
There was a complication with the pacemaker surgery and I had to be rushed back to hospital. They have since cut me open again to re-set the pacemaker and leads. I'm currently in recovery but I have to keep my left arm in a sling for 6 weeks and I can't do any physio and have limited movement. It is a big setback but it's something that needed to be done so that there's no risk of me collapsing and dying. After the 6 weeks once I'm fully recovered from this latest surgery then I can get back to physio and also finally start taking nerve pain medication which will hopefully allow me to do more in my rehabilitation from the spinal surgery. It's been an incredibly tough challenge and scary at times too especially having been cut open so many times in a short period. I hope that this will be the last of it, I don't think I can handle having to go back to hospital then I can fully focus on my physio and improve my physicality to be able to live a healthier better life. And hopefully I can raise the rest of the funds to complete the rehabilitation I need as there has been so many unexpected complications and setbacks. There's a lot of hoping but hope is all I have. So hopefully I can catch a break. I think I've been through enough. Feel free to share the fundraiser with anyone you feel might be willing to help me. Thank you all for your support. Hugs and love.
*16th April 2025 Update*
An update for those that have been supporting and following my journey through surgery and everything else.
As you know I've been having severe nerve pain for the past 4.5 months and couldn't take nerve pain medication because of the heart issue and would need a pacemaker. I went to the hospital yesterday and seen doctor who immediately booked me for surgery for the pacemaker because after seeing the ECG she said it's an emergency.
I tried explaining to her about the nerve pain and medication needed and she said forget about the nerve pain, the heart is so bad you could drop dead at any moment. Pretty scary thought.
So today I'm going to be admitted to hospital and should be getting the surgery tomorrow morning.
If all goes well I should be in hospital for couple days only.
*24th March 2025 Update:*
I wanted to provide you all with an update on my current situation. The surgery went well for the most part and achieved the goals we had hoped for. However, I’ve encountered an unexpected complication in the form of severe nerve pain in an unexpected area, which has unfortunately prevented me from being able to sit comfortably for the past three months. According to my neurosurgeon, no one has had this kind of response before, so it seems that I’m an anomaly in this case.
While there is medication available to help manage the pain, I’m unable to take it at the moment due to a heart issue that was discovered before the surgery. This issue had likely been present since I was young, but it was overlooked until now. As a result, I now need a pacemaker, both to address the heart condition and to safely take the nerve pain medication. I’m currently on a waiting list for the pacemaker, but it may take another 2-3 months before I can receive it. In the meantime, I’m still enduring the nerve pain, which has unfortunately limited my ability to make the progress I was hoping for.
There are also some additional issues I’m waiting for feedback on from the neurosurgeon, and I’m continuing to navigate the road to recovery. I’m still working on raising the remaining funds to complete the rehabilitation process, which may take longer than anticipated due to these unforeseen complications and the ongoing pain.
I truly appreciate all the support I’ve received so far—it has meant the world to me. If you feel comfortable sharing the fundraiser with others who might be able to support, I would be incredibly grateful.
Thank you for your kindness and understanding.
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Hello
I am hoping to raise funds on behalf of a friend of mine who has cerebral palsy. I’ve known him for a long time and he is one of the strongest, kindest, selfless people I’ve ever known. He has an amazingly positive attitude to life, no matter how much life seems to knock him down and his positivity and calming presence infects all those around him, making our lives just that little easier, lighter and more joyful. His perseverance, desire, determination and hard work in the face of pain continues to inspire me and many others.
I don’t know how to explain his condition correctly, so I’ll let his words explain the condition and the surgery required to help him.
My name is Kamal Jasmath. I am now 44 Years Old and from South Africa, and I have Spastic Cerebral Palsy. Basically, the damaged part of the brain causes the muscles throughout my body to basically remain in a permanently tense state, which limits my movement considerably. It can be such a deceptive condition too because on the face of it, when you’re standing or sitting you may appear to be fine. It only becomes noticeable when you have to move that people start wondering what’s wrong with this person.
What are some of the possible consequences of spasticity?
• Early aging (including early onset arthritis; a significant proportion of people with spastic CP develop arthritis even in their 20s and 30s)
• Contractures/permanent cellular changes in muscles and tendons
• Bone deformities
• Inability to fully strengthen and stretch muscles.
• Chronic pain and discomfort
• Negative changes alignment and posture
• People with Cerebral Palsy use up to 5 times more energy than regular people.
In addition, spasticity often negatively affects concentration and sleep—and it can cause anxiety as well. Studies have shown that tension in the body often translates to tension in the mind, and vice versa.
I was misdiagnosed as a child where I was told that the issues with my physicality can be fixed with just exercise. Unfortunately that wasn't the case and even though I struggled with most things that involved activity I didn't really let it stop me from trying to play sports with regular kids. I never tried to let my physical limitations hold me back.
As I got into my 30's I started noticing that my physicality was getting worse no matter what I did, nothing really helped improve it. At the same time, I noticed that my dad (who was a freedom fighter in South Africa and was sentenced to 10 years in prison for his part in helping free South Africans from the oppressive apartheid regime), as he got older as well he started experiencing some sort of delayed PTSD and he'd wake up in the middle of the night screaming, possibly remembering all the physical (being beaten and electrocuted) and mental torture he had to endure. I then at the beginning of 2016 I made the decision to go to the east and spend a year focusing on only therapy and training to do whatever I can to improve my physicality, not just for myself but also so that I could be better able to look after my dad.
I was scared of leaving him alone for a year but I figured in the long term it would be best because then I could take care of him but 3 months into my training, my worst fear literally came true and I received the news that my dad had died. I immediately flew back to South Africa for the funeral. I was back in South Africa for about 8 months. I lost everything, no family left and nowhere to live so I decided since I had nothing and no one here I would go back to the east to continue my training in the hope that it would benefit me. I endured some of the toughest most torturous training imaginable.
The training helped a bit but only because I was training 6 hours a day and it was only in 2018 in India after speaking to my aunt (who I had met for the first time) who's is a physiotherapist, she recommended me to a specialist whom along with an orthopedic surgeon correctly diagnosed me. Most of my life I was told that it was just a physical limitation instead of it being an incurable brain issue that is affecting my physicality. It has been quite a challenging thing to accept, especially when living your entire life believing that your condition can be fixed. What's crazy is that every doctor/physio I see now can immediately recognise that I have cerebral palsy and they can't understand how I was misdiagnosed since it's so obvious.
Over the last several years, I can feel my condition worsening . Movement is tougher, risk of injuries is higher. I’m in a lot more pain, every day it’s something or the other, muscle spasms, joint pain, nerve pain, sometimes major discomfort, and more frustrations. Through an incredible amount of research I learned about a surgery called Selective Dorsal Rhizotomy (SDR) which is a spinal-cord surgery in which the surgeon divides the spinal cords sensory nerves into their smaller branches, called rootlets, and then cuts the rootlets that are most overactive, thereby getting rid of spasticity in the lower body. Currently, SDR is the only treatment that can eliminate or permanently reduce spasticity.
Usually this surgery is performed mainly on children but there only a handful of Neurosurgeons in the world who can perform this surgery on adults. I have spoken to the Neurologist who diagnosed me, as well as few other Neurologists and another Neurosurgeon, and they all feel that SDR could benefit me hugely. I have also spoken directly to about 20 other adults who have had the surgery done and every single one said that it has changed their lives considerably for the better. It is the best thing they have done. Obviously, the surgery does come with risks as it is a very intricate, delicate surgery.
I would need to remain in hospital for about 2-3 weeks to be assessed and I would be in a wheelchair as I wouldn’t be able to walk initially (it may take a few weeks to be able to have limited movement or walking capabilities), thereafter I need at least 1-2 years of intensive rehab as I would need to re-learn how to walk, how to move, how to strengthen muscles that had false strength because of the spasticity. Total cost of surgery, other medical expenses and rehab would be at least $85 000 (US).
I am all alone. I have no support structure to help me. If I injure myself (which I have often – falls, scrapes, cuts, bruises, concussion, ligament damage, etc. I have to find a way to deal with it myself)
I am just so tired of all the muscles spasming, joint pain, nerve pain, back pain, muscle tightness, falling, and all the injuries, etc. While there is no cure for cerebral palsy, this surgery would literally change my life and is the only option and my last resort to at least be able to live a slightly healthier life. The surgery cannot be performed once you reach a certain age.
Thank you for taking the time to read this.
I am and would be eternally grateful for any support I can get.
Take Care.
Please contact me if you have any questions or need any other information