Please help Luis this Xmas!

Good day

This is the third time I am submitting to Xmas Wish and I just hope that it is lucky one and our prayers will be answered.

I would like to tell you all about my inspiration, my fiancé, Luis Canto E Castro. He has a disease called Spinal Muscular Atrophy (SMA), Spinal muscular atrophy is a disorder that affects the control of muscle movement. It is caused by a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that is connected to the spinal cord (the brainstem). The loss of motor neurons leads to weakness and wasting (atrophy) of muscles used for activities such as crawling, walking, sitting up, and controlling head movement. He is Type 3 of this disease due to his symptoms. He is fully wheelchair bound and his wheelchair is electronic as he has very little mobility in his legs, arms and hands. We have a lot of doubters, as people cannot understand why me, as an able bodied woman would want to “settle” for someone with a condition as serious as SMA. Well it’s easy to answer, love has no boundaries and I see him, as the caring, loving, attentive, strong, brave man he is and not his disability. He is 30 years old, which thank the Lord is 28 years over his life expectancy date. He has a goal to become the world’s oldest SMA survivor and if I know him, he will succeed.

He has had to overcome many obstacles, traumas and discrimination throughout his life, and it is a miracle that he has become the person he is today. Any normal person would have given up and let their problems take over their lives. Not Luis, he picks himself up, dusts himself off and carries on. He is always looking for the positive and always finds the best in everyone and every situation. He inspires me and everyone around him. And even though he is disabled he is always looking to help someone else in need, which to me is truly amazing as no matter what, he is always thinking of someone else and how to help them and not himself.

If one were to look at him, you would think that his disability leaves him helpless, this is far from the case. He thrives on trying to be as independent as possible. He will always attempt to do everything on his own before he asks for help which is commendable. Between myself and his assistant we are there to do the things that Luis cannot do on his own like bath, dress and the other seemingly menial things us able-bodied people take for granted. He has the ability to make everyone smile and just has a way to put people at ease around him so that they see the person behind the disability. He makes you see a different side of life and a new appreciation for everything around you.

He eventually managed to find work in Feb 2014, he was appointed to do Telesales and recruitment. I know people hate telesales agents but a more dedicated one you cannot find. Through all of his pain he gets up every morning, goes to work, works a full day and still comes home to make more calls. He does this as he is so grateful to be able to work. Martin from Prologue Insurance saw what is behind his disability and gave him the chance to prove himself. Luis has worked hard and was promoted to Telesales manager and the both of us will always be grateful for the opportunity Martin has given to him.

In May 2013 he started experiencing pain in-between his shoulder blades and more prevalent weakness in his arms. He went to the neurosurgeon fearing that his disease was once again active in his body. After many tests they discovered a cyst in his spinal cord and that was pushing on his brain stem. This in turn was taking away the little independence he had left, the use of his arms. Because of Luis’ disease, his survival rate for any operation is minimal, but being the fighter he is, he wanted to try and get rid of this cyst. In June 2013 he went into the Sandton Medi Clinic with a 20% chance of survival. The operation took 3 hours and he only woke up after 6 hours from the anaesthesia. I was just grateful he was alive but the operation was unsuccessful, they could not reach the cyst as his spine was calcified around the rods used to do his spinal fusion when he was 10. The operation went horribly wrong and he ended up in more pain than when he went in.

Very downtrodden, we left the hospital not knowing what the next step would be. The pain continued to increase and my feeling of helpless was becoming over whelming. In September 2013 we went for a second opinion, and were told the only way forward is another operation. If we opted to not have the operation he would lose all motor function, he would become a full quadriplegic and will have to be put on a respirator for the remainder of his life. Again his chance of survival a minimal 20%, with major risks of cerebral meningitis, but our options were limited and he decided that 20% chance is better than no chance and he does not want to live an even more limited life.

On the 14th October 2013 we set off again to the Sandton Medi Clinic, with this operation they would cut through his neck, through the C5 and C6 vertebra and insert a shunt into the cyst and allow it to drain into his spinal cord. If successful we were looking at least a week in ICU and then time in the general ward. He was extremely nervous about this operation as the first one had gone so wrong. The operation took 5 hours, when they wheeled him out of theatre, his first words were “I have a headache”. His neurosurgeons and anaesthetists were amazing and he recovered quickly and within 3 days was discharged. This operation was deemed a success as the cyst is draining and reducing in size.

Unfortunately the pain has returned along with other terrible symptoms. His speech has become slurred, his ability to swallow has become much worse and his risk of choking has increased. In October this year we saw a Neurologist who specialises in patients with motor disorders. Numerous things are going wrong at the moment, the rods in his spine are shifting as his scoliosis is returning so we have to consult an orthopaedic surgeon which will be done in January. He has to undergo intensive Vital Stim therapy which will try and improve his speech and swallowing capability, if this does not improve he will need to have a feeding tube and will need to have 90% of his nourishment through the feeding tube and not per mouth. The bottom line is that he has a progressive disease and he is deteriorating rapidly, and the unfortunate reality is that he will more than likely die from complications caused by the disease which means my time with him is limited and that is a very difficult thing to come to terms with.

Just the thought of being without him is heartbreaking. Its a difficult life as I need to be up as early as 4am every morning to make sure everyone is up, make sure my children get ready for school, take everyone to work and school, work a full day, pick everyone up and go home to be a mother to my kids and a loving partner to him and to still study in between. I try my best to put all of this aside so I can do my best in my job but things are becoming increasingly difficult as he needs intensive therapy which will be taking hours of normal working day and I fear my job will become in jeopardy. As hard as it is not being able to dedicate the much needed time to my job and studies, my family will always come first and this keeps me writing these letters to Xmas wish so that maybe by some miracle we can receive the little assistance needed. I would love to fulfil his bucket list but medical costs are continuous so it leaves little disposable income to plan the things I would to give him and his health is more important right now.

We are faced with 1 major difficulty and hope someone out there is willing to help us.

A major issue we have is that we do not have the correct transportation, due to the lack of muscle in his neck, his head is not properly supported and what essentially is happening is that every time we pick him up it is causing trauma to his neck and this is affecting the cyst in his spinal cord, it is advisable that we need to reduce movement to his neck as much as possible. I have a normal sized car so we are constantly lifting him in and out of the car. We have tried to look at getting a larger vehicle but the costs for us are just too high. Our hope is that someone might be able to sponsor us a vehicle that will be suited for his needs. Something he will just be able to drive up into, this will minimise the pain caused from lifting him in and out of a car as well as reduce the trauma being caused. Being disabled limits your independence and there are times where Luis cannot accompany me places as either I am too weak to lift him and the chair or there is simply not enough space. This in essence takes away more of his independence.

Thank you for taking the time to read this email. And I hope someone will be able to help us.