Welcome on my journey! I’m 35 years old, but I wont have much time left, unless I raise the money for a special surgery. I have been in severe pain almost all my life, however not diagnosed before I was 26, when I finally got an MRI. It turned out, that I have a rare condition named Chiari malformation, which, in most cases, requires a more or less straightforward approach. So was the opinion of the doctor that gave me my first brainsurgery back in 2006, and the one that gave me my second surgery in 2010, despite my many questions about other malformations. Unfortunately I was in my right with my questions. It turned out to be much more complicated, me belonging to this group of patients with multiple different conditions and malformations, which experts found interfering with this “simple” approach, and in some cases, like mine, making this simple approach life threatening even. After a while of slowly getting worse, a couple of months back my health took a dramatic turn, when I totally stopped breathing during the night, only saved in last second, by my – unfortunately now deceased - dog. After weeks at hospital and several specialist opinions who all agrees on that I need fusion surgery at its least, and very soon, to survive, I have now hid a wall. They don’t all agree on the method for this to happen, which will be normal asking different surgeons, but they almost all missed a very important issue for me surviving this huge surgey. I am now left with this one, top specialist, who it seems I can finally trust to save my life, but unfortunately I have trouble getting the surgery overseas approved by a rigid public health system, so I have now turned to private funding. I have been given maximum a couple of years to live, if I don’t get this done, however, as my health is deteriorating every day and given that I have almost left this world once, I really need this to happen as possible.
Thank you for taiking your time to read my story
This campaign is solely to raise the funds for surgery, travel and accomodation for me and a helper/career. All money from this campaign goes into a seperate bank account, created solely for this collection (please contact private if you want more info on this account, as its been advised form Gofundme, not to share the account number here).
In case of the money, fully or partly, isn't needed anymore, that be death or sudden change in situation like eg. state funding or winning the lottery ;) then all collected money shall be donated to chiari research, equally shared between:
Chiari & Syringomyelia Foundation (http://csfinfo.org/)
American Syringomyelia and Chiari Alliance project (http://asap.org/)
- Oliver Hartz
- Jeanette Rasmussen
- Jonna Åkersen