My Daughter’s Rare Disease Taught Me How To Live With Fear And Uncertainty. Here’s What I Learned.

The other day a colleague sent me a text to cancel a meeting. “I’ve been so sick for the past several days,” she began. “I’ll need to reschedule.”
I wasn’t sure whether she meant she was physically ill or sick over the election. The two options seemed equally plausible.
Today, many of us — about half of us, actually — across the country feel somewhat sick. Because if the personal is political, the inverse is true, too.
We don’t know what the future holds; it’s not clear how much will change or how quickly; and we feel like the dreams we had may turn out to be no more than fantasies.
I’ve been here before in more personal and heart-wrenching circumstances, but the feelings are all too familiar.
Nineteen years ago, I sat between my husband and my father in a small, antiseptic room at Boston Children’s Hospital and received the news that would change my life forever.
“Your daughter’s genetic test results indicate a diagnosis of MERRF syndrome,” the doctor we’d never met before told us. He went on to explain that MERRF, or myoclonic epilepsy with ragged red fibers, is a rare form of mitochondrial disease, that it’s degenerative and that there’s no cure.
All of this seemed preposterous. Our sparkly, feisty, sweet 5-year-old daughter Dalia had an insidious, incurable illness? We’d suspected something was going on, hence the genetic test in the first place. But this? Unimaginable.
I mean that quite literally. We were not able, or even willing, to imagine what it might mean to watch our daughter grow weaker over time, to bear witness to the loss of the very things she was just learning to do.
For the next 12 years, until she died at 17, we didn’t need to imagine.
Ever so slowly, but also in the blink of an eye, Dalia lost her ability to walk, talk, eat and breathe without a ventilator. She needed “eyes-on care” 24/7, meaning myself, my husband or a nurse trained specifically in her care had to be with her at all times.
I am not now the same naive person I was that day in the doctor’s office. Now I understand what it means to live every day with fear, uncertainty and despair. I know how overwhelming the darkness can feel. But I also know that even when we feel utterly out of control and eviscerated over the reality unfolding in front of us, we can act in ways that give us some agency over the swirling chaos.
What did I learn from living on the precipice?
Microdosing hope, joy and action is a powerful antidote.
When Dalia was first diagnosed, I set out to find a cure. Given that I don’t have a medical degree or gobs of money, my mission didn’t last long. All I could do was hope the science would beat the disease’s progression. But that particular hope was clouded by wishful thinking.
I needed hope on a smaller, more achievable scale.
I hoped for days in the winter that were warm enough to take Dalia out for a walk in her wheelchair and days in the summer that were cool enough. I hoped for a dinner date with my husband that wasn’t interrupted by a phone call that made my heart jump. I hoped that I was giving my other kids a childhood that wasn’t consumed entirely by Dalia’s intense needs. I hoped for hours that were filled with more magic than medicine.
Hopes that could be realized sustained us and gave us the confidence to keep hoping.
And if we could find hope, then we could create joy, too.
King Solomon, or whoever actually penned Ecclesiastes, was right when he wrote, “There’s a time to weep, and a time to laugh; a time to mourn, and a time to dance.” But he missed that all those things can also happen at the same time.
Dalia’s diagnosis ushered in an era of weeping and mourning, but never at the expense of laughing fits and spontaneous dance parties. Dalia, for everything that was taken from her, showed us that joy and sorrow can hold hands.
When she used a medication syringe to squirt water at her brother, or danced to “Shake it Off” when all she could move were her shoulders, she reminded us that our hearts could be broken and overflowing at the same time. There was a defiance in her happiness that made it all the more meaningful.
I learned that no matter how overpowering the darkness feels, we can create corners of beauty that nourish and sustain us.
Hope and joy on their own, though, didn’t feel like enough. They could change the tenor of a given hour, or even a whole day, but they couldn’t make a broader impact.
Shortly after Dalia was diagnosed, my father told me about an organization that was advocating for legislation related to rare diseases and suggested I get involved. At that point I was using every ounce of energy I had to take care of my daughter, my other kids, my marriage and myself.
“I’m too busy tending to my trees,” I told him. “I don’t have it in me to worry about the forest.”
I wondered if that was selfish, if I was thinking too small. But I was way too busy to do more than wonder.
A few weeks later, I picked up a flier in Dalia’s neurologist’s office for a fundraising walk to raise money for mitochondrial disease education and research. A walk with the family felt way more manageable than advocating for systemic change.
We joined the walk that year, and every year after for more than a decade, putting together a team of family and friends called Dalia’s Dynamos. The walk became Dalia’s favorite day of the year. In the weeks leading up to it — while she could still talk — she would chant, “Dy-na-mos, Dy-na-mos,” while we made our signs and decorated our shirts. And at the walk, with her siblings as her co-captains, Dalia proudly led the way in her purple wheelchair. Over time, we raised tens of thousands of dollars for mitochondrial disease. Millions? No. But tens of thousands was something. One step at a time, one walk at a time, we made a difference for ourselves and for others.
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Now, many of us are wondering how we’ll get through the next four-plus years. Hope, joy and action make a potent cocktail, even when sipped. They defuse the despair and give us the strength to keep moving forward. I learned that in my darkest days and remember it now.
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