Category: Medical & Emergencies
Start Date: August 13, 2019
My name is Jakob Jõgisuu, and due to battling with the onset of blindness aged just 31, I’m putting out a plea for help in fighting the brain tumour, regaining my sight, and getting my university studies back on track.
In the spring 2017, I was diagnosed with a brain tumour, my life turned upside down! Shortly after the diagnosis, I lost my sight. The transition from a seeing man to a blind man was rapid, and within weeks I was destined to live a completely different life. It was a very tragic moment in my life!
Since Christmas 2017 my guide dog, Life, has been by my side – helping me to get around the city, and as a new companion in my home. He has had some exciting adventures in his service already, including a flight to Brussels, Israel, Spain, Switzerland, and a boat trip to Stockholm.
A little about my life before blindness. I graduated from the Tallinn School of Music on Accordion, and have always highly appreciated culture and heritage. On my mother’s side, I’m from Kihnu island – I started life there, but attended school in Tallinn. In 2012, I graduated from the TTK in their Architecture and Urban Planning qualification, level 6. In autumn the same year, I took the Master’s program in Architecture and Urban Planning at the Estonian Academy of Arts. In Spring 2014, I took a start-up entrepreneur course, and by the autumn had a fully functional architecture studio up-and-running.
Since the onset of blindness, I have studied 8 different types of massage at the Center for Blind Masseurs, and acquired a qualification level 5. I also finished audio-video description course and was chosen as a Student of the Year 2018 of Tallinn.
I like to set myself ambitious goals, and to make them happen!
April 1st 2017, at the age of 29, was the first time ever I had woken up in hospital. All my life I had loved doing sports, living an active life with a healthy diet.
The first signs were headaches, and noticing slight changes with my sight – such as difficulty making out pedestrians on night time drives.
Initially I just wrote it off as over-exhaustion, but after the symptoms continued, a basic checkup at the ophthalmologist showed deformation in the brain’s structure near the optic nerve. I was sent to the hospital for urgent medical research. The following weeks passed as if in slow motion, waiting with dread for the life-changing results.
The first operation showed no signs of problems, because the tumour cells could not be distinguished in the sample taken. The results of the second surgery, which was a very difficult procedure, brought shocking news. The surgeon was an experienced professional and I knew I was in good hands. But the side-effects included severe convulsions across my whole body, nausea, loss of balance, and problems with both my speech and my memory. I was more frightened than I had ever been in my life!
I was then officially diagnosed with a malignant brain tumour, which stresses on the optic nerves. And depressingly, that second arduous procedure had failed to remove the whole tumour.
In 2017, around Midsummers Eve, my treatment plan had me attending radiotherapy sessions, which lasted a full one and a half months, with a treatment every single day. This was the maximum dose possible, and can only be prescribed to humans once in a lifetime. The summer in Estonia was extremely hot that year, and friends all around enjoyed sunbathing at the beach. I, on the other hand, had to hide myself from the sun under a black raincoat with a long hood, to avoid burns. This was a psychologically very difficult time for me. It all happened so fast, with little time to process what was happening to me. My mother and brother were loyal and very helpful, supporting me and enabling to survive this nightmare. I thank them both, with all my heart! My father passed away some years ago.
The next big goal for me is to get my sight back – I miss it! For this, I need your help, if you are willing and able to support me.
In Estonia, the only option is Chemotherapy, which has toxic non-recoverable side effects. Some of the more horrendous examples are non-recoverable blood vessels, from which the drug is administered; impotence; constant nausea and tiredness. As a young man, these possible impacts are appalling to me, and I'm doing my best to find a more modern method of treatment.
My plan is to visit doctors and hospitals abroad, who have more extensive experience with this type of disease. So far I’ve started discussions with twenty two specialist doctors from different countries.
But medical bills don’t tend to come cheap, so to do this I’m going to need all the help I can get!
I also want to complete my Masters studies in the field of Architecture, and to use my skills to address the life of people with special needs among us, and their integration into society. I want to examine the social integation of disabled people based on my own blind man experience. My aim is to weave two different worlds together - the seers and the blind. And I have not ruled out studying a new subject either - I believe I can handle it.
In my spare time I listen to audio books, dance a variety of dance styles, play harmonica and take part in the blind brass orchestra.
I have a routine of healthy eating and train often, with the aim of entering the next Paralympics as a skiier.
So far in life my goals, no matter how ambitious, have always tended to be achieved.
I am full of optimism, and hope I can live a loving and caring family life.
Any donation you can possibly spare will help speed up my healing process, and help me to achieve my dreams.
A huge thank you from the bottom of my heart to everyone who donates!