Helping Samantha Stark

 

This is my friends story 

All funds will be for medical to at least give this beautiful lady some quality of life 

 

My name is Sam Stark. I am 26 years old. 

I was officially diagnosed with Neuromyelitis optica spectrum disorder in November 2022 after being sick for years. I have had plasmapheresis (which had to be stopped as I developed acute kidney failure - I had 4 rounds of dialysis) and I have had two infusions of rituximab. I am still suffering with the same symptoms as before the rituximab but my my CD19/ CD20 levels are supposedly "too low" for another dose, I am rapidly getting worse. I had to leave my job due to the severity of the migraines (which is just one of the many awful symptoms I suffer from on a daily basis). 

 

The muscle weakness in my arms and legs are getting worse (I have dropfoot on the right leg and wear an AFO). I am now battling to swallow, I am on medication to make my stomach contract (my nerves/muscles in my intestines and stomach are not working how they should and I am fully reliant on a suprapubic catheter due to urinary retention. These new symptoms as well as visual changes occurred even after the rituximab and methylprednisolone treatments. My protein levels in my most recent csf results are triple the normal range. Due to currently being able to work and the ongoing medical bills my bank account has been depleted. I am now reliant on my parents for financial support but they are struggling financially.

 

My suprapubic catheter needs to be changed every 8 weeks, I am on 6 different essential medications and I have multiple (frequent) specialist appointments that range between R1400 - R3050 depending on what is done in the consult. I am hoping to get an appointment with a neurologist in Cape Town who specializes in my disease. I got quoted for blood tests the other day and the total was going to be R14000. I am deliberately not seeking important treatment as it is just too unaffordable. I used to rescue baby birds (handrear them) and I used to do dogsitting - this was my passion. My quality of life and my ability to do the things I love are no longer possible.

 

Now I cannot even get out of bed, I am on one liquid/ soft meal a day because of me battling to swallow and I am in constant pain. If I had financial aid, every bit counts, I can seek the necessary care that I need. There is currently no cure and the "standard treatments" they have tried on me failed and made me even sicker. At the very least I would like to be able to pay for pain management so that I am realistically as comfortable as I can be. I honestly believe that if I can at least manage the pain, I can start job-seeking again. I am a qualified foundation phase teacher but I was most recently a practice manager in a medical setting and I loved every minute of it. It broke my heart when I had to leave due to the physical disabilities my body was facing.