One of the Rarest
People on the Planet
At 36 years old, I received a diagnosis that most doctors have never heard of. MERRF Syndrome (Myoclonic Epilepsy with Ragged Red Fibers) confirmed by whole genome sequencing at 92.8% heteroplasmy with the m.8344A>G mutation.
Over 92% of my mitochondrial DNA is affected. My cells cannot produce energy the way yours can. Every single day is a battle fought at the most fundamental biological level, in the power plants of my own cells.
MERRF affects everything. My muscles. My nerves. My sleep. My autonomic nervous system. I live with chronic neuropathic burning, severe back pain, sleep apnea, and a body that fights against me every single day.
And yet, I run two businesses. I founded Get Called, a pay-per-call performance marketing agency with seven years of operational experience. I am building a life insurance agency. I show up on the days I can barely walk, on the days the pain is 9 out of 10, on the days I wake up feeling like my body betrayed me overnight.
I refuse to stop. And I refuse to let other MERRF patients fight this alone.
