For six years, I have been fighting a rare disease that was dismissed as stress.

It started with fatigue so severe I could barely get through a day, severe muscle weakness, and pain that never really left. My blood work kept returning abnormal results (numbers that should have raised alarm bells) but doctor after doctor dismissed me. I was told I was fine and it was all in my head or stress related. However, I kept going anyway, spending money I didn't have on specialist after specialist, accumulating debt in the hope that someone would eventually take me seriously - even though I was just a young adult. I found that I never got to experience being a young adult and often had to deal with the repercussions of doing small things that brought me joy as it would often flare up all my symptoms.

This year, I finally found a doctor who listened to me. I was diagnosed with stage 4 endometriosis and underwent surgery to treat it and while it helped some of the pain, it triggered something far more serious. The fatigue became debilitating. I started struggling to breathe. I was hospitalized for further testing, which revealed chronic lactic acidosis (basically my blood is too acidic) and a severe decline in my lung muscle function.

I am now largely housebound. Most days, I lie in bed feeling as though I am slowly drowning with my lungs struggling, my arms and legs weakening, my body quietly failing. The working differential diagnosis is Mitochondrial Myopathy, a rare and serious condition that affects the body's ability to produce energy at the cellular level. Remember how we were taught that mitochondria is the power house of the cell? Well mine don’t work anymore so there is no more energy for me to exist. This is a confirmed diagnosis but the type of myopathy is not. Confirming this type requires specialist testing that is extremely expensive and without a confirmed type of myopathy, I cannot access the targeted treatment that could slow or stop the progression.

I hold a master's degree and an undergraduate degree in psychology and neuroscience. I built and ran a non-profit organisation providing mental health care to rural communities. I had a life I loved: baking, making art, using my mind to help others. All of that is on hold now. I can't work and I can barely function. And watching the life I worked so hard to build slip away has taken a toll on my mental health that I also cannot afford to address.

I am not alone, I have a wonderful partner who has carried us both through this, and two rescue cats who have kept me company on the hardest days. But the financial weight is crushing us. I lost my mother when I was 14. My grandmother, who was my last real family anchor, passed away earlier this year. There is no safety net. There is only what we can hold together.

What I am asking for will go toward:

The specialist diagnostic testing needed to confirm Mitochondrial Myopathy and unlock targeted treatment

Ongoing medical consultations, medication, and hospital costs

Day-to-day living expenses (groceries, utilities, rent) while I am unable to work

I am not asking for a miracle. I am asking for a chance to get a diagnosis, to access treatment, and to have enough breathing room to focus on getting better rather than on surviving each month.

If you can give anything at all, it means more than I can put into words. And if you can't, sharing this is just as valuable. Thank you for taking the time to read my story.