go fund my sister

My sister Julia (left), my nephew Levi and me (Klara) before Julia became severely ill.

Hi everyone,

===>longer, english version below:

Kurz und knapp: Meine Schwester ist schwer erkrankt und findet in Deutschland nicht die medizinische Versorgung, die sie benötigt. Mit diesem fundraiser möchte ich Geld für ihre Behandlung durch einen Spezialisten in Spanien sammeln um ihr die Chance auf eine Rückkehr in ihr altes Leben, gemeinsam mit ihrem Kind zu ermöglichen.

===> You can also support us via paypal if you don't have a credit card, we will then transfer the money to this GoFundMe Campaign:
paypal.me/GoFundMySister

I am trying to help my sister Julia who fell ill in the beginning of 2018 and within the past 14 months slowly lost the life she knew.

In late January of 2018, Julia came down with a viral infection and a high fever of 108°F/41° Celsius. She had it checked by her doc who found nothing unusual, Julia obviously just caught a terrible flu. 2 weeks later she felt almost recovered and went back to work. But something felt different. Something wasn’t right. 

Her part time job all of a sudden seemed too much to handle and she felt like she couldn’t keep up with her former day to day life anymore.

My sister is a single mother of a boy- my nephew Levi who by the time her sickness  emerged was about to become 5 yrs old. She had been working part time since Levi was 1 year old, she was used to manage her and her sons life independently so it seemed unusual that she now had trouble to get the daily stuff done. She once described it as she was running behind herself constantly, unable to keep up with her usual life’s tempo. It was frustrating and it got worse fast. Spring of 2018 went on with my sister now feeling constantly sick. She woke up with a low fever every day, excruciating muscle pain and a list of weird symptoms that seemed to make no sense. She was unable to concentrate at work, made mistakes she never made before and finally got laid off in May of 2018. It was the first time in her 16-years long career that she lost a job. It was very hard for her and she didn’t understand what was going on.

Sickness increased even without working. Julia saw all kinds of physicians and after a penicillin treatment for her inflamed throat and lymph system, things got so bad that she had to spend several days in two different hospitals. Still no one could tell where her symptoms came from. Julia was told by every doctor and every hospital that she was „fine“. Except that she wasn’t. In October of 2018 things finally got so bad, that my sister could not get out of bed anymore. Flu-like symptoms, constant fever and muscle pain in her arms and legs, tinitus, night sweats, irritated bowl syndrome and increasing insomnia became so bad that my 38 year old sister became unable to care for her 5 year old son and also herself. Everything from there can only be described as a nightmare and trauma. Not only for her, but for everyone within our family. My 67 year old father had to move in with my sister to take care of her 24 hours a day, 7 days a week for almost 3 months. Levi had to move to his dad.

One thing I love about my sister- she never gives up! Determined to find out what was wrong with her she researched with the little energy she had left and came across the movie „Unrest“, a documentary by Jennifer Brea, a severely ill young woman whose symptoms where basically just what Julia had experienced herself. We finally knew what we were looking for and found qualified doctors who diagnosed Julia with Myalgic Encephalomyelitis, also known as Chronic fatigue syndrome. ME/CFS is a complex multisystemic disease. Involved are :
the immune  system
https://www.pnas.org/content/114/34/E7150  
blood volume/autonomic issues
https://openheart.bmj.com/content/3/1/e000381 
metabolic issues
https://www.pnas.org/content/113/37/E547  
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/  
and neurological issues, perhaps secondary to structural cerebrospinal issues
https://www.ncbi.nlm.nih.gov/pubmed/29391028 

At this point in time there is little research about the disease and no cure. Prognosis of ME/CFS is poor, people stay sick for years or even decades. Some of them unable to leave their home or  bed. The only medical advice to my sister from M.E. experts at Charité (a well renowned hospital in Berlin, Germany) is not to exhaust yourself. Also to boost her body’s natural immune system with a number of supplements (such as vit B12, vit D or a different amino acids) and to give her body time.

Julias daily list of supplements. All of these help to keep the immune system and nervous system in order.

Twice weekly IV infusions with Saline and high dosed vitamin C help to stabilize her immune system and blood volume.

Julia was also diagnosed with POTS, another chronic disease causing abnormal high heartrates as soon as you stand or sit up. Standing up can cause immediate fainting at any time.

Thanks to more research and other patients suffering from M.E. who are sharing their journey in blogs or forums online, Julia found out about a possible underlaying cause of her sickness. She was able to get in touch with one of the very few qualified neurosurgeons in this field. This allowed her to get the right testing and a new diagnose on top of M.E. 

Tests revealed, that Julia has Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), Subaxial Instability of the cervical spine, Cervical Kyphosis and disc herniation in one segment of the cervical spine. Having CCI and AAI means that the cervical spine and atlas joint (joint connecting your skull with your cervical spine) are unstable or hyper mobile which literally causes the head sinking down  the spine causing pressure to the brainstem. Pressured brainstem can cause a list of symptoms within the Nervous- and Immune system and also Metabolism. Thus there is a good chance of significant improvement of her symptoms, once the pressure from the cervical spine to the brainstem gets removed. 

To stabilize her neck and cervical spine Julia has to wear a neck brace. Thanks to the IV infusions and monthlong rest she is now able to get up out of bed for a few hours per day. She can not leave her home, except for doctors appointments and always accompanied by a friend or family member to drive her. With surgery, the cervical spine and atlas joint will be fused (connected by bone and screws) to get stability back.

To understand what is going on in my sisters cervical spine, watch a video of Dr. Gilete describing a diagnose that is very similar to Julia's here .

There is little research for now about the connection between CCI, AAI and M.E. but there have been other patients who got surgery. One of them is now, 1,5 years post surgery, 100% back to health. His severe M.E. and Pots went away after surgery to fix his CCI and AAI. He shares his journey in a very detailed blog:

https://www.mechanicalbasis.org

CCI and AAI are serious conditions. Untreated they can cause significant damage to the brainstem and nervous system. Severe pain, apnea and paralyzation are things that could follow. At this point in time, the only medical way to fix CCI and AAI is an occipitocervical posterior fusion stabilization surgery.

Good news is- there is surgery to fix this and Julia found some of the few qualified neurosurgeons worldwide to perform surgery on her in Barcelona/Spain.

There are currently no surgeons for this particular indication in Germany.

Bad news is, this surgery will not be covered by German health insurance. 

My sister went from working in music and media business, having a solid career, to being unable to work at all. She is currently living off of very little unemployment money provided by the German state. During the last 7 months Julia used her complete savings to pay for much needed IV Infusions and supplements that helped her stabilizing the immune system. She also used her last funds for the required upright MRI imaging to get a secure diagnose for CCI and AAI. 

At this point she has literally no money left. 

Another thing I love about my sister is the way she values loyalty, family and friendship. If you need help, Julia is there! I am happy to have a sister I can always go to, always talk to, a person I can always count on.
Now I feel like it is on me to help her.
I am a student preparing for my masters degree and our parents are already retired. It hurts me, that we as a family are not able to fund her urgently needed surgery. The costs are rising to a level we as a family can’t keep up with.

I would like to kindly ask you to please help me help my sister!

We need to raise a total amount of 92.000€  within a few months to pay for 2 step surgery, performed in 1 session, hospital stay, complication insurance and a comorbidity deposit. 

Please help Julia to get her and her life back! Julia shortly developed difficulties breathing. To make sure she stays stable and will be able to travel to Barcelona, we do not have too much time. We do need all the help we can get to raise an amount of this extend! Everything helps! Everyone who has something to spare would make a big difference to my sister’s and my nephew’s life! So far in life we have been very lucky and blessed and always been able to help ourselves. This thing has brought us to our limits.

Please share this page with your family and friends! Please donate if you can! Again, everything helps! Even tiny amounts can make a difference! :-)

Thank you for reading this, sending out love from Berlin 

Klara x