Breath Taking: Jessica Fein on Presence, Advocacy, and Navigating MERRF Syndrome

In this episode of Comforting Closure - Conversations with a Death Doula, I had the privilege of sitting down with Jessica Fein, the author of Breath Taking. Jessica opened up about her deeply personal journey as a mother and advocate for her daughter, Dalia, who was diagnosed with a rare condition called MERRF syndrome. Through her story, we explore the emotional, physical, and spiritual challenges of navigating life with a rare disease and how Jessica found moments of presence and peace even in the most overwhelming times. 

What is MERRF Syndrome? 

MERRF syndrome, short for Myoclonic Epilepsy with Ragged Red Fibers, is a rare mitochondrial disease that affects the body’s ability to produce energy. Mitochondria, the "powerhouses” of our cells, help convert food into energy. When they don’t function properly, organs like muscles, the heart, and the brain don’t get the energy they need. 

So, what are the symptoms of MERRF syndrome? Jessica shares that symptoms can vary but often include muscle weakness, seizures, coordination problems, and hearing loss. For Dalia, her disease eventually led to her needing a ventilator to breathe and a feeding tube. 

Living with a Rare Disease 

Jessica’s world was turned upside down by Dalia’s diagnosis. Their lives became a delicate balance of medical challenges and the everyday realities of raising a family. “Being an advocate for your child can feel both empowering and terrifying,” Jessica says, describing how she often knew more about her daughter’s condition than the doctors treating her. 

What is the prognosis for MERRF syndrome? Sadly, the disease is progressive, meaning that symptoms worsen over time, and there is no cure. The prognosis often involves a gradual loss of muscle function and increasing neurological difficulties. 

Is MERRF Inherited? 

MERRF syndrome is passed down maternally, adding another layer of emotional complexity for families dealing with this rare disease. 

Jessica’s role as a caregiver became all-encompassing. “Our world shrank,” she explains. The complexity of Dalia’s care meant they couldn’t easily leave Dalia with others. 

While there may be no cure for MERRF, Jessica’s story illustrates that healing can come from simply being present and embracing the love and support around us. 

Links/Resources: 

• Jessica Fein’s Website: https://www.jessicafeinstories.com 

• Breath Taking by Jessica Fein: Available wherever books are sold