Mother and son lost everything

Pauliina is my name and I live in Sweden. My son is today older than in the photo above, he is 14 today.

Last year, in April, I was in in a longer hospital stay with a severe artery rupture and was unconscious, paralyzed between my seizure periods.

During my stay, my home stood unprotected and some people went in and robbed me and my son for almost everything we have ever owned.

No insurance could cover since there were no time to organize house safety when I went to hospital with ambulance and I am left unable to work after my injuries after hospital stay.

I live in another home today but I cant afford to replace anything of my properties, they took clothes, shoes, furniture, kitchen machines, all of my tools, vacuum cleaners, piano, laptops, phones, almost everything of worth and my hobbies were quite expensive.

Horse supplies, sewing supplies (lots of meters of fabric and such) and my cats are now without their own supplies. They need a claw tree and original litter boxes, mats and furniture back.

We dont have a TV, no shelves or wardrobes. The worth must have been at least 50k euro (50 000 euro/dollar) with shipping included but the most acute things would cost 7k euro (70 000 euro/dollar, shipping included).

Those things the robbers left me to have for myself, are mostly vandalized. My shoes, they took my left footed shoes to be cruel and most of my photos of my children, medical documents. These cannot be replaced but some things could be replaced to almost what it was.

Maybe I could buld some shelves myself and a claw tree, but the robbers did not leave my electric tools or materials for me and my son.

My son cannot live with me today but that is another story in my Gofundme for medical costs, see my other Gofundme.

As described, I had and have a medical emergency and I wrote an article last year for Facebook.

From the bottom of my heart, my story;

MOTHER screams to FREE BABY BOY

8 november 2024

From everything I am, I want you all to be sure that my children gave my life full of meaning and light.

My story started 2001 with an ICU where I convulsed in eptileptic-like seizures and breathing stopped once. Doctors found a brain swelling and a telangiectasia in my brain, sort of a small aneurysm. Medication worked well but I never got rid of some of the symptoms.

I had my two beautiful children in 2002 and 2010. First born is my daughter Emma and my son is named Loke. My life has been full of love and laughter as well as horses and my thoughts most often has been protected by Gods light, until my symptoms got worse in november 2015. I had the most awful pain in my head and face from this day and it never ended.

My health ran steadily downhills with more neurological issues and doctors tended to call it ”functional disorder”, though I had some findings as syringomyelia and 2017 I had a neurologist appointment that lead to a Botox trial for head pain. This went into a disaster with a serious paralysis period and again in ICU. Doctors ran all possible tests such as EMG and biopsies and found out myopathy, but still no help.

Much later I learned that Botox can never be injected in patients with muscular diseases before cervical or CCJ instability and some specific muscle disorders (myasthenia) are exluded. I had drop attacks and proximal weakness tendency since 2010 so this should never happened if doctors followed their own practicing rules.

No help at all but they ran new tests for other muscular disorder and 2018 me and my son Loke finally were diagnosed with a genetic mitochondrial disease, OPA1. We never got any help for our symptoms and my son has been in muscular pain and other sad symptoms such as head and back pain since a few years old.

I have been through CSF leaks and bed bound over longest periods, some of the new pain managements helped for a few years but today no doctor will help with pain or anything and I will soon tell why.

After years working with WTF patients, I reluctantly had to look into Craniocervical junction instability for my symptoms as they started to seriously handicap me. I went to Dr Gilete and had my new imagings and a serious rotatory atlantoaxial subluxation could be seen such as a mild Craniocervical instability, though it seemed most serious since my eyesight and breathing improved with traction.

Back in Sweden I actually had a new doctor who really intended to help me find a surgeon, and soon I was diagnosed with instability in Sweden as well but I had to redo every imaging I had in Barcelona.

My surgeon landed in a suspected Bow hunters as well and ordered new imagings of arteries with head rotation. First try failed since contrast did not run through left Vertebral artery and next time, my surgeon was gone with the wind. I stood alone with the best imagings ever but the surgeon had left the building for ever.

Nowhere to find a new surgeon for years and now governments ”Child protection service” meant that I gained something from living with these symptoms and pain and they truly told my baby boy to NOT tell anyone about his own pain and symptoms.

OPA1 mutation was now hidden behind governments CPS doors and they decided to TAKE THE BABY BOY FROM HIS ONLY PARENT; HIS LOVED MOTHER.

The boy cried and screamed for his mother and I just died.

Heart broken for ever. Baby boy was now punished if he ever dared to cry for mum or of his pain, hed id not cry much about his pain before because he never had to be afraid in mothers caring arms. He could after some time in his ”prison” now see his mother once or twice every week but my lovely baby boy once full of joy and love, started to loose hope to ever move back into his mothers care.

I was told, my only option was and still is, to get rid of my injuries and genetic diseases, because there will soon be more of these. I went into a hurry to find a new surgeon and found one who intended to fuse me but I found an alarming problem in my images – left Vertebral arterys blood flow seemed on and off. My new surgeon looked into my new worsened symptoms and could only agree that it had to be ruled out before any surgery. This took years too long. Intention was to look into the artery at the beginning of 2023 and fuse right after, maybe with some correction of the artery.

My catheter angio took one year of waiting instead of immeadiate action as my symptoms alarmed upcoming disaster in januari of 2023, but after the catheter angiografhy I saw hope. Vertebral artery was twisted in those images I moved my head and fainted could see light of our tunnel. My son almost hoped this time was real but other doctors saw something else. Time to get rid of that complicated patient. They stopped my surgeon from ever seeing me again and told me the withdrew my instability and Bow Hunters diagnoses without ever telling me or my other doctors what to do instead.

It was easter this year when I died in my own bed first time. I can not tell the whole story but there is no denial in what happened next, Gods hand took over my breathing through hours and gave me one of the most beayiful nights of my life.

Just a few weeks after, i woke up one morning with acute convulsions and immediate paralysis of my legs, though I was warned the evening before by an angel and I only had to tap emercency number on my phone. Everything was packed in my bag and I had my clothes on when I went with ambulance into ER for next 26 hours of seizures (in collar, imagine that pain!) without ANY meds for seizures or pain. A friend had to call another hospital to pick me up from first ER and she met up my new ambulance at the other ER when I came in, and the seizures had stopped, I was no longer conscious enough to care about anything before I woke up on a hospital bed beside the Tomography Computed machine. I had no clue that I already had a CT the night before and now it was next morning.

I was told that I was going into a new CT angio and something ran through my mind. I clearly remembered one thing. I called for the radiology doctor and I dont know how I could remember the whisper from previous night, the angels warning also whispered in my mind to look into my arterial images from before, in my mind.

I did recall where my artery looked injured before, but my angel had whispered bleeding, and now in this state I could not talk, only whisper and I asked the radiology doctor who carefully listened with curious but serious look in his eyes.

”Please doctor, can you see if there is any older blood beside my artery if I had a bleeding when I turned my head earlier”

The doctor understood immeadietly and asked one thing only.

”Where is it?” and I told probably right below C6 and possibly also at C4 height. My Vertebral arteries are not running through spine as in normal people and therefore it is very easy to see any damage below C4 and C5 height.

Doctor started to run to the computer room but suddenly stopped and asked, "What is is called?"

I had no strenght left to whisper but I screamed out loud, BOW HUNTERS!

Nurse told me to roll over to the table but in my state, I failed to understand where I was and put my feet the wrong way first.

When nurse told me that I should put my head in there, I found this too funny and started laughing as I also was in a delirium from unbearable pain and brain injuries after untreated seizures non stop for 26 hours. I laughed hysterical and placed my head at the right place and thought, would it be wisw to take off the collar to ensure any new instability or worsening can be seen. Therefore, I asked the nurse to take my collar off and so she did. I can not even remember the moment she went from the table, all went black when she took off my collar.

It was not black too long, I died immeadietly. This time no breathing could save anything and God was not present in the machine room. I went up instead and that is another story, I remember a lot bu the forbade my death and sent me back to my body. I felt like new born baby as I opened my eyes only to tell the nurse that I needed water and more sleep, i refused to get up becaise i really needed to lay down and sleep. They could not let me sleep in the machine and had med to sit for obly a few seconds before the worst nightmare of convulsions. Have yo ever seen an animal bleeding out in cramps and convulsion, then you can imagine the sight. Finally my nurse started screaming for the others to get help and put monitors all over and the last words I heard before my heart and breathing stopped AGAIN was, HELP ME, LOOK AT THE HEART BEAT!! SHE IS GONE!

I dont know how many people there was buy I imagine four up to six by my bed when I woke up and looked into the radiologist doctors eyes. I cant tell more, it hurts too much to see his scared eyes before me, but only minutes from there I went into unconsciousness and woke up sometimes only to my seizures without any refill of life saving medication.

I had one and only revival from a nurse and the radiologist doctor and now the rest of the hospital decided to leave me to die.

Though I came home with a bunch of new diagnoses, such as Mukopolysackaridosis type 2 (MPS2). I had a hell of a nightmare alone bleeding out and seizuring for ten days in my bed at home. I saw my baby boy a few times before someone got to know about my newly discovered genetic disease MUKOPOLYSACKARIDOSIS 2. This disease can lead to many injuries such as CCJ instability and brain damage, and maybe that was the reason to not do my acute surgeries.

I would not be alive at all but God once again saved my life and I never took my collar off again- it holds my artery in place. Bow hunters does this, if not treated instability or other cause it will rupture or cause strokes.

Though my MPS seems mild since I dont have typical organ failures, and there is NO excuse to leave me to die without even telling me that they did or why they chose to kill my childrens mother.

I accidentally took my collar off for too long once when I changed collar in order to shower and it took only two minutes without collar to start up a seizure.

I am still left with an unalive order if I try too look into a doctors office, every doctor knows since the artery bleeding can not be unseen, not even hidden in my FILES, and so not the other deadly acute injuries in those images where anyone can see that my heart is no longer beating and in last sequense, left Vertebral artery is no longer bleeding. In my files its said ”contrast agent” pooling beside artery but I am still told that ”contast agent leak from VA is not the same as blood” and the hughe CSF leak is a ”newly outgrown bone formatition”. A bit remarcable since I had CT the night before and no new bone formation. How can new doctors without any knowledge about previous university hospitals specialists diagnoses HIDE and THROW my files and surgery plans into trashcan without contacting any sort of specialist themselves. One mission only, unalive patient.

It is a true miracle that I can walk NORMAL with my collars help, I could not stand up, lift my arms or hold my bladder at hospital stay. But time IS short, one can not survive for too long only with help from a collar that is also soon not able to serve its mission, I need new collars and meds for seizures and of course surgeries for instability, for reduction of two processes of cervical spine (right C1 and left C6) to relieve left vertebral artery and right internal jugular vein and surgery for the large injury of the artery. THERE IS NO WAY I CAN FIND THAT KIND OF MONEY FOR PRIVATE SURGERIES.

My daughter Emmas heart is broken in pieces and I will not mention more about my most beautiful Princess of light and goodness.

My BABY BOY LOKE has NO LEGAL RIGHT in Sweden to ever see his mother or say GOODBYE if I dont get rid of my deadly injuries or seizures or my genetics. As soon CPS and Baby boys dad got the news about my MPS2, the new desiscion was that my children would NOT EVER KNOW about their possibilities to run their genetic tests for this and also OPA1 is hidden under a ton of sand. The desiscion also includes that my boy cannot ever see me again since 16 juli this year, what if I accidentally tell him that he needs to go and get his tests alone later when I am gone. If he is affected, there IS TREATMENT, WHY DO THEY HAVE TO HIDE MPS2 and OPA1?

My HEART SCREAMS FOR JUSTICE AND LOVE FOR MY CHILDREN.

Baby boy dreamed about many beautiful things, he played the piano, enjoyed nature and cared for all human and animals. Nature is still his go-to and sit with a bonfire with his thoughts but I wish him so much, happy thoughts instead of trauma and worries.

He and his sister had an own pony named Mumin who is no longer on earth, but still he talks about his loved animals and how much he wants to serve human in some way in his adult life. Also he is interested in politics and has for many years now been studying Swedish military history, and since we could not find a military uniform small enough for a 11-12 year old boy, I sewed him an uniform for a birthday and joy was enormous. Both my children are loveliest on earth and het old me every night how much he loved me and vice versa, totally natural sense of love and trust in his then only parent.

Father was not present until 11-12 years old.

Baby boy has always been in a lot of thoughts and wanted to educate himself for some sort of engineer or other interesting work to explore and learn, he has always been a natural teacher for others and his logic mind lets him explain the most complicated things so anyone can understand. He wanted to combinate his work with a militarian carrier as there is a lot of his interests to look more into.

I love them to the moon and back and I can not do more, it is acute to save my Baby boy from his heartless prison and I dont even have time to find him a new parent before I go if I cant find a miracle surgery without self pay and immediate JUSTICE for my son.

I dont teven have the legal right to tell him what God is for me.

And this is the only way I would have a chance to start all over with surgeries, BUT IT CAN NOT HELP MY SON IN THIS ACUTE SITUATION OF DISASTER; SORROW, HOPELESSNESS FOR A CHILD.