Life changing spinal surgery for cerebral palsy

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