Background information

Emilie’s story:

“My life looked like I had always imagined. Married to a loving man, with 3 lovely children and a fulfilling job with scope for personal development and one that made a difference.

I worked for a multi-national company coaching fellow employees and managers in personal development and long-term employability. I also trained and supervised other coaches working within the company.

That was until 2014 when I was diagnosed with a Myeloproliferative Neoplasm (MPN), a chronic form of blood cancer. In principle, it is not fatal, but also at present, it is not curable. It has numerous life-changing symptoms, particularly fatigue. My life suddenly looked completely different.

I did not want to let this disease to disrupt my life totally and started looking for a new balance. My employer agreed to me working four mornings a week, stil guiding fellow employees in their personal development.

However disaster struck again in 2016. I woke up one morning with a headache that was so bad I could only lie horizontally. I was admitted to hospital where I was diagnosed with a leak in my meninges, the membranes enclosing the brain and spinal cord, known as a CSF leak. This caused a loss of fluid within my brain, and as a result, my brain did not have sufficient fluid leaks to act as a shock absorber.

The search began for a solution to this problem. It seemed simple: just like with a puncture in a bicycle tire: patch that leak!

That turned out to be easier said than done, as the exact location of the leak could not be found.

Since 2016 I have been admitted to 4 different hospitals for in total of 6 weeks. I have had numerous different types of investigations to locate the leak, but with no success.

In October 2019, my specialist decided to stop searching for the leak and told me that there were no more treatment options.

After lying horizontal for three months, my body slowly adapted, and fortunately, I can now function vertically. I still live with a continuous headache, and if I do too much, the headache becomes much worse. As a result, I now live a life akin to an “elderly” woman. I have to take things easy, I have to sleep in the afternoon, and I can no longer work. All very saddening, but I am not alone in this as I am in contact with other patients worldwide via Facebook.

During my period of enforced bed-rest, I began researching into my condition further and how the leak might possibly be repaired. It is a very rare condition, but fortunately, I found the specialist in this field via the Internet, Dr. W. Schievink. This (Dutch) doctor works in Los Angeles and is mainly involved in detecting and repairing leaks in the meninges. During my treatments at the Utecht Medical Centre, he watched every step of the treatment I received there.

I recently contacted Dr Schievink. He still believes that it is possible to repair the leak, but I would need to go to him in LA. The cost of American hospital treatment is much higher than in the Netherlands. Additionally, I would have to stay in LA for a while, and someone would have to come with me because I must not be alone after surgery.

To be able to pay for a treatment in America and everything that comes with it, family and friends have set up the “Lichtgevend” Foundation.

Together with the Foundation, I would like to ask my friends and extended family to help me fund the cost of my treatment in the US.

Will you help me? ”