Bas’ story: A Race Against Time
My name is Bas Jacobs, a 45-year-old man living in Venlo, married with two wonderful daughters: a teenager of 14 and a toddler of almost 3. Besides my family, traveling is my greatest passion. I enjoy discovering new places, learning about other cultures, and exploring beautiful places with my family. But in 2018, a journey began that I never expected – a journey filled with confusion and helplessness, and one that I cannot complete alone.
It started with weakness in my right arm. What seemed like a minor inconvenience at first grew into a nightmare. Performing simple, daily tasks became increasingly difficult: hanging up my coat, brushing my teeth, taking a pair of jeans from the top shelf, taking a casserole out of the oven, or filming my oldest daughter performing. These are things you normally don’t think about, but for me they became increasingly difficult. Meanwhile, my left arm is also no longer functioning properly. After countless tests and doctor’s appointments, the diagnosis of ALS hung over my head – a diagnosis that turned everything upside down. It was frightening, but in the end it turned out not to be ALS, but a cerebrospinal fluid leak. Although that was better news, the relief was less than expected.
Cerebrospinal fluid surrounds your brain and spinal cord. A tear in my spinal membrane causes this fluid to leak out, causing the pressure around my spinal cord to be incorrect. This causes nerves to die, which explains the increasing weakness in my arms, the muscle breakdown in my neck, and the terrible pressure in my head that I struggle with regularly.
The strength in my muscles continued to decline. After much waiting and hoping, I underwent surgery in Amsterdam in November 2023. This was my chance to regain control of my life. But during the operation, things went wrong: the signals to my legs failed, and the doctors had to abort the procedure to prevent permanent damage. After months of rehabilitation, I can fortunately walk well again, but the problem remains: the leak has not been sealed, and my muscles are getting weaker every day.
Dutch doctors are not willing to operate on me again. The risks are too great. If nothing is done, paralysis of my arms and possibly my neck is imminent. Then there is the fear of premature dementia, hearing loss, brain or spinal bleeding, unbearable headaches, coma, and in rare cases even death. But there is a chance. In Freiburg, Germany, specialists are willing to perform the surgery. They can help me. In Freiburg they specialize in this rare condition, and that gives me a lot of hope and confidence.
On October 21st, I can go there, but there is an obstacle: my health insurance company refuses to cover the treatment. They only cover a small portion of the preliminary investigations. The costs are enormous, and we as a family cannot afford them. The prospect of becoming paralyzed and losing control of my body is frightening.
But this journey – the most important of my life – I cannot make alone. I need your help. Together we can ensure that I am treated in Freiburg so that I can pick up my life, my future, and my passions again. Every step closer to treatment is a step closer to the chance to see my children grow up and continue to explore the world with them.
I ask you to join me on this journey so that I have the chance to live a healthy and strong life again, together with my family.
Your support not only helps with the medical costs, but also gives me and my family hope for a better future – hopefully to stop this debilitating disease!
Thank you on behalf of my wife, my daughters, and myself: thank you for your time, support, and trust!
