I am a 34-year-old woman. 12 years ago I was diagnosed with a rare disease. Giant cell tumors started to grow in my Maxilla Facial area.I didn’t have Medical Aid back then and had to make use of the Provincial Hospitals. I had to wait months before I could get any assistance. Since then I have had 14 surgeries on my face. In 2013.Thereafter I had my biggest operation to date. I was six hours in the theater. I couldn’t eat any solids. Then my husband got retrenched at work and I was and still am unemployed due to this disease. I spent most of my time in the hospital. Things were very bad. We had our two little boys, no income and me going in and out of the hospital.
Unfortunately, there was no treatment for me, surgery was my only option every time. In 2014 I fell pregnant after my Doctors told me I will never be able to fall pregnant again. We were expecting a little girl, my husband and I were in 7th heaven, but the tumors started to grow again, this time in my sinuses. Which meant, the tumors blocked my airways and I couldn’t breathe at all. I had to breathe through my mouth throughout my pregnancy. My husband had to occasionally rush me to the hospital for oxygen.
I gave birth to the most beautiful and healthy baby girl. The tumors were removed again, but 3 months after the removal it started to grow again. A few months ago, my Doctors made a shocking discovery, the tumors have spread all over my face, brain, neck, arms, chest, womb, spinal cord and back. I’m struggling to sleep because I am in constant pain. It’s even difficult to breathe or sneeze sometimes. The tumors are back in my sinuses.
My husband found a job, and I am now on a medical aid. Finally, there is treatment available for me, unfortunately not in South Africa. My Doctor got a quotation for my treatment which is quite a lot of money, R250 000 for 6 months of medication. We contacted my medical aid, they immediately refused to cover my treatment. My Doctor got another quotation of R61000, but still, my Medical aid refuses to cover the amount.
My Doctors wrote motivation letters, which was sent to the Medical Aid including all my test results.
After numerous appeals to Discovery, they have continued to deny funding for my treatment. Although my condition is life-threatening and as a result, my skeletal structure is deteriorating at an alarming rate. The Medical Council approved the medication without any hassles. My time is limited and I am not sure how long I can endure this pain and discomfort. As I mentioned the medication is not available in South Africa and needs to be ordered from abroad.
Therefore, I would humbly like to request for any amount of financial assistance. I would be eternally grateful. I am still young and my children are so small. My wish is to live so that I can see my children grow up. Thanking you in advance.