How to trade successfully in 2020
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Read more about Tom’s story
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The history of my illness goes back to the year 2012. Before, I was a normal guy, married, with a little daughter, and my sonny just about to come. I had my pastimes, such as dancing or speedway, as well as worries that were no different from other young parents’. Then, one day – all of a sudden – my leg felt stiff, and a warning bell rang at the back of my head. In order to take a single step, I had to lean against something, e.g. the wall. Walking was becoming more and more difficult, so I made an appointment to see a neurologist, and that is how my visiting doctors’ surgeries and hospital wards started. It took 2 years to have me diagnosed. The name of the disease and its future effects weighed me down to the ground…
I suffer from X-linked adrenoleukodystrophy (X-ALD). I know, it is difficult to pronounce, no need to remember the name. This is a genetic disease and in my family my mom’s brother had it, too, being mistakenly treated for multiple sclerosis for many years. Unfortunately, despite his young age, he is no longer with us… The disease destroys myelin, i.e. the layer which protects the nerve cells located in the brain. These cells make us able to think and control our muscles.
The illness takes no prisoners. It will not wait until my children grow up and do not need their father’s strong arms any more. The nasty stuff is knocking me out before their very eyes and I cannot defend myself against it. To slow the progression of the disease, I take medication twice a day: Lorenzo’s oil. There was even an Academy Award-nominated film under this title, showing a fight with this disorder in children. Unfortunately, the oil is not so effective for patients in whom the disease have already developed. It does not treat the cause, but only slows the progression.
The disease is progressing rapidly. I still can stand on crutches for a short while, but move around in a wheelchair most of the time. I have given up the fun of riding on the two wheels of a speedway bike for the unpleasant necessity of using a quadricycle for the disabled. You can’t get everywhere, but, at least, you won’t get caught for speeding…
am troubled with strong spasticity, overactive bladder, Addison’s disease, and my muscles are getting weaker and weaker day by day. There is no hope for me in Poland, that is why I started looking for help abroad and got to the USA, where specialists, following a series of tests, suggested an innovative gene therapy. There is one snag, however. The therapy costs almost $ 250 000. This is the price of my life.
I would like, with my wife, to watch my kids grow up. I would like to be there for them, offering my support and fatherly strength and advice. The disease wants to take it all from me and, alas, is doing well… Pain and helplessness are overwhelming. Why has it happened to me? Why do I have to beg people I do not know for assistance and put my feebleness on display? I have no other choice, however. Without this therapy, all I have is counting down the days until the end…
