Help Maj to get lifesaving surgery

€9,952 of €70,000 goal

Raised by 130 people in 44 months


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/)
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Buen día everyone!

So dates are finalised and I'm busy getting things in order before I leave to Barcelona! Many little and big details to care for in preperation.

I leave for barcelona the 2nd of October to have preop consults the 3dr and admission and first surgery -odontoidectomy - the 4th. If everything goes well and I can handle it, 2nd surgery -fusion and correction of previous decompression -will be the 6th.

It's exciting and horrifying at the same time! Feelings are all over the place. I know I'll get through it because there's no other way but right now its a lot to take in. There's no denying that this is dangerous surgery and though I have perfect trust in these doctors I also know I won't be an easy case. It has to be done and I'm so happy that it is finally to come about.

Much love and wishes for a great day - May
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My sister has finally got some great news -this is what she writes Good morning good people it's been a while since I updated my status regarding my health situation. I've been exploring a few options and finally finally I can say that I have found a neuro surgeon -here in Spain even -that I will trust with my life with no hesitation and who has the skills of the surgeon in America. It's just about time as the strange feelings inside my brain are getting much worse. However it's coming together finally and I felt a little bit of my old happy bubbly self again over the last week! It's sounds a tad bit strange to be excited about having your head cut open and bones removed and moved around in your body - but I am! And it's coming up soon! It's still a huge bill but it's more doable and with a bit of combination of fundraising and bank this year long nightmare will soon be over! I will keep you posted when final date is set and of course over the process! Much love - May The price tag is a lot different than to America, but we still need and appreciate all the help we can get. Please share
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Be as hysterical as you want

So I want to share some thoughts. There's many good testimonies out there, describing the chronically ill patients relationship to friends and family. Relations are incohearently difficult for both the ill and for the surroundings. Many brave souls have shared their feelings about the difficulties their illness brings to the relations in their lives. I say brave, because the result is very often offended friends and family. What these rarely understand though, is that we actually do understand their reactions - also the ones that hurts us - because once we are just the same. We don't judge them or hold grudges for it - we share our feelings to get understood - not to hurt or get back at anyone or make them feel pity on us. For many of us it's a cry out for help. For many of us it's a help to our fellow sufferers. For them not to feel alone with these feelings and a help for them to articulate them and make their families and friends understand.
Many times, when I shared these testimonies over the last few months, I had friends with chronically ill family members ask me, how they can best help them and show their support. This alone is a beautiful gesture.
Even as the chronically ill, it can be hard to actually answer that question however - what is it really we need the most, from our family and friends? Of course the simple answer is understanding and acceptance but... how do you actually show anyone this?
I will share my recent experience with you. By no means is this meant to hurt any of my family or friends - i have many many beautiful people in my life, that gives me loads of love and support, for which I'm forever grateful. That i pick one out now doesn't mean that i think or feel anything less of the rest. I love everyone. Many have shown me other important things.
Lately one of them however, said something to me that made a difference in understanding myself, and what I really need- as a chronically ill person and add a human being - as well as made me able to put some words to it. A thing we often forget to mention, when we share these feelings and thoughts, is that it also makes us think about how we, ourselves, react to other peoples needs, and I believe it's a very important point to make. But back to the story...
I was in hospital at the time and things where getting tough and i was getting very frustrated. What my friend said to me, that somehow stuck in my brain, was "you can be as hysterical as you want". My friend might never realised how much this little sentence actually meant, but to me it was exactly what I needed to hear. It's taken me some time, to work out why this made me feel better instantly, but the penny finally dropped.
It was the ultimate expression of understanding and compassion. Of accepting me exactly as I was at that very moment. Not trying to fix anything or make me in a better mood (something i think we are all subjective to, even on a daily basis). Not exhibiting pity or annoyance. I felt i was allowed to just be me, whatever that meant, at that moment. Now i always feel at ease around this person but i don't think i totally understood why, before. Now i realise, it's because I feel that i can just be me - whatever mood I'm in - no expectations and no pressure.
Why is this the ultimate help you can give someone? Because it's what we all need to learn to give to ourselves! When we accept ourselves just the way we are and feel, at any given moment, we show ourselves the greatest love.
Of course this not only goes for us, that are fighting physical or mental obstacles - however, our pain often makes this a very hard task. It's hard to love ourselves when we are judging ourselves for these feelings. My friend reminded me of this, with one little sentence. Reminded me to be okay with who i am - right now. To know, that I'm perfectly loveable just the way i am -pains and despair included. To not judge myself for the feelings I'm going through in this difficult situaton, that I'm in. So that is my answer - be as hysterical as you want...
Much love May
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So this day isn't the easiest on me... its mothers day in Denmark as well in states and though I known for a long time I likely not will become one myself the reality call of the last couple of weeks made it final. I can't pretend it doesn't hurt Because there nothing i wished for more. It hurts because it's a day where I think about my own mother and the sadness my situation is for her. The last two weeks another two chiari children gained their wings. My heart bleeds for their families. This day makes my heart bleed especially for the moms,for my own mom that will end up the same if I don't get the help I need in time and it bleeds for my own loss of motherhood. However it also calls for me to let that mother love in my heart flow because the love will always be there. Solet's celebrate the Norgmother love within -wether you lost your mom or your child -born or unborn - the love never change so let's celebrate the mother love much love May
Happy mothers day
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€9,952 of €70,000 goal

Raised by 130 people in 44 months
Created December 29, 2015
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OH
€12
Oliver Hartz
35 months ago
€100
Anonymous
35 months ago
€10
Anonymous
35 months ago
JR
€20
Jeanette Rasmussen
35 months ago
€20
Jonna Åkersen
35 months ago
CN
€100
Cecilie Netteland
35 months ago
LW
€20
Lisa Wimmerström
36 months ago
AK
€20
Astrid Kastrup
39 months ago

Håber alt det bedste for dig

€20
Anonymous
39 months ago
RN
€20
Rikke Nielsen
39 months ago

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