Special treatment will save Lucy’s life. Help!

My name is Lucie, I am 41 years old and I live with my husband and son in a semi-detached house not far from Prague. I have been fighting a disease called Von Hippel Lindau syndrome since I was 13 years old. It is a disease in which benign tumors are formed, but they are dangerous because they are deposited in the brain, in the spinal cord, in the eyes, and at the same time, very malignant kidney cancer can also appear with this disease.

My grandmother succumbed to this disease at the age of 27 and my mother at the age of 23. I was 2 years old then.

 I have had a number of surgeries and Gamma knife or laser irradiation. I had spinal cord tumors removed several times during neurosurgery at ÚVN, after one such operation I learned to walk again, I also had the above-mentioned kidney cancer.

Two years ago, I just lost an eye due to an eye tumor.

For the past 9 years I have been receiving experimental and successful biological treatment, which unfortunately stops working. One of my many tumors has burrowed into my spinal cord and is forming a cyst around itself. This tumor cannot be operated on without the doctors harming me and cannot be irradiated. As spinal cord compression occurs, I have pain and sometimes my legs don't work.

How will the collection help?

A drug that is available in the US, Britain and Switzerland will help me, and its effects would be able to significantly shrink the tumors. Unfortunately, this drug is not available in the EU and is very expensive. They will bring the medicine to the Czech Republic for 630,000 CZK/month. In Great Britain, the drug is cheaper, but we do not yet know its exact price. The treatment is given for a year.

We tried to ask the insurance company for an extraordinary payment. However, the insurance company rejected the medicine. I want to fight on, I intend to appeal against the decision, but I do not give hope for a positive decision and time is running out ...

If there is even more compression of the spinal cord, the consequences will be irreversible.

My family and I have agreed that the collection will be aimed exclusively at the purchase of medicine and costs directly related to treatment (if I have to be treated abroad), for the time being for 6 months. The other costs will go to us, we want to be financially co-responsible and we don't want to ask others for everything. Unfortunately, we are not enough to pay for the medicine ourselves. Thank you to everyone who helps me keep fighting.