I Was Determined to Cure My Daughter. But I Learned a Powerful Lesson

My daughter had MERRF Syndrome. Chances are, you've never heard of MERRF Syndrome. I hadn't either before Dalia was diagnosed at age five.

What I learned the day my daughter was diagnosed is that MERRF is a rare form of mitochondrial disease. I re-learned that mitochondria are the powerhouse of our cells. (I'm sure I knew that back in high school but I'd promptly forgotten after my 10th-grade biology final.) I also learned that MERRF is degenerative and there's no cure.

What I didn't learn at that appointment was that everything about our lives would soon be defined by MERRF.

The doctor explained that the very nature of a rare disease means there's not much data to predict the future. He couldn't tell us how quickly the disease would progress or where in our daughter's little body it would strike next.

What he did know was that the fact that Dalia had balance issues meant she'd surely be in a wheelchair before long, and her mild hearing loss would likely render her deaf over time.

The doctor's decree felt like a mistake. I noted the impressive degrees on his wall, but how could he possibly think our feisty, compassionate, joyful daughter was harboring such an insidious illness?

For a few years, the disease loomed over us without dramatically changing our day-to-day existence, but we knew it was waiting.

Imagine being introduced to a 20-foot-tall fire-breathing monster with spikes poking out of its body and fire blowing from its mouth. The person introducing you explains that the monster is now going to be living with you.

Most of the time, it will sit quietly in the guest room. Other times it will poke its head out and breathe a bit of fire your way or bump into you in the hallway just to remind you it's there.

You know that one day the monster will swallow you whole, but you don't know when that will happen.

In the meantime, you build a life.

For the next few years, the weekly appointments increased—speech therapy and occupational therapy, this doctor and that one. We added more and more medicines to quell Dalia's tremors and help her muscles stay strong.

But all that was in the background. School and horseback riding, art projects and storytime took center stage.

Then, when Dalia was nine, she caught a cold that became pneumonia, landing her in the intensive care unit for three months. When she left the hospital, she'd lost the ability to eat, speak, walk, and breathe independently.

The monster was set free.

Now Dalia needed my husband, myself, or a nurse trained in her care to have eyes on her 24/7. We learned how to suction a trach and administer nutrition through a feeding tube and adjust settings on a ventilator. We became experts in the disease we wished we'd never heard of.

But that's not the only way I changed.

At first, I was determined to cure my daughter. Never mind that I hardly knew what mitochondria were, I was going to find an elixir or potion or gene therapy that healed her. I scoured the internet for experimental trials. I met with doctors. I joined rare disease advocacy groups.

But the monster just kept spreading its tentacles.

And in the meantime, I had a glorious child who just wanted to be a kid. She wanted her mom to snuggle and play and bake cookies, even if she couldn't eat them.

I learned that not everything can be solved. The victory wasn't in personally curing an incurable disease, it was in making each day as joyful as possible for my daughter, and for my other kids, too.

Sometimes that felt uncomfortable and made me anxious. How could I be joyful when my daughter was getting sicker?

But I'd watch Dalia dancing to Taylor Swift when all she could move was her shoulders or using empty medication syringes to squirt her brothers with water or racing up and down the skatepark ramps in her wheelchair, and I followed her lead.

I learned that we can be happy, even when we're decimated.

Dalia died one week after her 17th birthday. She was rare in so many ways. MERRF Syndrome was the least of them.

Dalia taught me that joy and sorrow can live together, that each becomes more powerful because of the other. That's a lesson I turn to often now as I grieve for my daughter.

Three hundred million people worldwide are living with a rare disease, 25-30 million in America alone. Two-thirds of those with a rare disease are children. Those children have parents and classmates and teachers and friends. Which means most of us are affected by rare disease in one way or another.

If joy and sorrow can live together, surely hope and action can, too. The first step is awareness, which leads to research and funding and health equity.

February 29 is Rare Disease Awareness Day, which is the perfect time to start.

Jessica Fein is the author of Breath Taking: A Memoir of Family, Dreams, and Broken Genes, coming May 7 and available for preorder now. She hosts the "I Don't Know How You Do It" podcast, featuring people whose lives look unimaginable and who triumph over seemingly impossible challenges.

All views expressed are the author's own.

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