diet, long-term neurological rehabilitation, commuting, treatment and medical consultations

My name is Maria and I am 39 years old. I have been struggling with a complicated genetic disease for 8 years - von Hippel-Lindau syndrome, which manifests itself in the formation of various cancerous tumors by the body.

My treatment history begins in 2014, when I underwent excision surgery brain tumor. In the years 2015-2017, doctors attempted to neutralize it eye hemangiomas, which posed a risk of complete and irreversible loss of vision. Then, as a result of the bursting of a cancerous tumor in 2018, I was paralyzed from the waist down. So far, I have worked as a salesperson and traveled many kilometers by car. As a result of paralysis, I lost the ability to practice my profession and had to quickly change my profession to earn a living. I have always tried to be very independent, so I started training in the IT industry and after some time I started working in this area.

Over the next two years, I struggled to get back on my feet until I was finally able to get out of my wheelchair and use a walker. Despite the joy of the great progress I have made and the attempt to return to work, 2020 surprised me with further adversities.

In July, I had my last adrenal gland removed, which is responsible for the entire hormonal balance. Only a month later, I had it removed a cancerous tumor from the cervical spine. However, this surgery had complications and I had to be re-operated because of a cerebrospinal fluid leak. In October, I underwent another surgery, this time to repair a crushed lumbar spine. In November, I had a cataract removed from my left eye.

These 6 months were very exhausting for me. Nevertheless, after each of these surgeries, I sat down to work at the computer to take care of my well-being.

In 2021, there was a small breakthrough in my life... I remember the day I let go of the walker and went to the store to buy bread... However, the relief I took from these adversities lasted only 11 months. Then I underwent surgery to save my eyesight. Unfortunately, there were also complications in the form of detachment of the retina of the left eye. Doctors failed to save my eyesight, and I haven't been able to see out of my right eye since 2019.

I have been blind for a year. I had to leave my previous life and rebuild it. I moved to my hometown. I participate in training for the blind and learn to type on a computer so that I can return to work. I am happy with every progress I have made. I also managed to organize a social apartment, which unfortunately needs to be completely renovated. Thanks to the kindness of a large company, I will receive the necessary materials, but I have to pay the specialist myself. The cost was estimated at PLN 35,000. PLN, which exceeds my financial capabilities.

I also need funds for a special diet, long-term neurological rehabilitation, travel to doctors and specialist courses. There are still tumors and bone fractures in my body, I have to be under constant care of specialists due to an unusual genetic disease.

My biggest dream is to have my own place, because a person cannot develop without having his own place. Currently, I live with all my belongings in 6 m2 with a friend who took me in, along with my dog and cat. I would like to become a programmer. I dream of having a strong, fit body, being able to walk independently and enjoy the life I have been given.

Thank you very much for all your support.

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