During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post highlights the story of Noah Singer, parent of a child with CF.  

We all have things that make us unique. Some of us are smart. Some of us are strong. Some of us receive challenges that help define who we get to be. 

The challenges brought by cystic fibrosis (CF) dare some of us to dream of a life where this disease is an antiquity. I dream of the day when people read about CF in books and wonder what life was like when there wasn’t a cure. We’re not there yet, and there are many challenges to achieve this dream, but I believe that we will get there by working together to speed advances in the treatment of CF.

CF’s challenges are numerous and heartbreaking. Most notably known as a lung disease, CF negatively affects multiple organs and increases the likelihood of developing other comorbidities. I received a crash course when my son, Levi, was born with CF about two years ago. Some kids with CF are born with something called meconium ileus. Meconium ileus means that a baby’s first stool, called meconium, is blocking the last part of the baby’s small intestine (ileum). This can require surgery to remove.

Levi is one of those kids and required multiple bowel-related surgeries shortly after birth. I was not prepared for this having no indications of any issue prior to his birth. We went from a normal birth to signals that Levi wasn’t hungry shortly after birth to emergency surgery. I’ve never had a surgical procedure, so this was a new world for me. It was emotionally hard as the future filled with lots of new, scary questions and possibilities. The best advice was to take things day-by-day.  

Following surgery, Levi developed an acute, chronic lung infection, likely related to his surgeries, which made his first months of life very hard. He was even admitted to the hospital for a lung infection two days before my wedding. Luckily, Levi was able to join our wedding, but the disease continued to throw curve balls at us.

Looking back on this, I did not become overly stressed or overwhelmed. In the moment, my priorities were very clear. There was no higher priority than ensuring Levi was well taken care of. Everything else matters less — even wedding prep — and could be taken care of later, outsourced, or managed in some other way. Our son only had one dad, one mom, and he needed our help.

I hope for a future where no one goes through this. The respiratory teams at the hospital are already telling us that they are now seeing fewer people with CF. This is great and reflects the significant progress that we are making as a community, but fewer hospitalizations is not none and not good enough.

Every flare up and chronic infection puts you on guard for what may come next and reminds you about the daily battle and opportunities we have to solve and overcome.

In addition, while there has been significant progress in helping 90% of the people with CF, there is also a remaining 10% who need help, which is why Emily’s Entourage is critical.

My family and Levi have overcome more than I could’ve imagined. Not that we didn’t have the resolve, we did, but I never would have imagined a world where I spend a good chunk of my time thinking about pharmacies, insurance, breakthrough medicines, and ways to improve outcomes for a disease. 

Despite multiple hospitalizations in his first year, we figured out how to care for Levi and keep him out of the hospital. I’m proud to share that he has remained out of the hospital for over a year now. He also recently became eligible to start a clinical trial testing a mutation-targeted therapy on his rare CF mutation. It’s still early days, but this gives me a lot of hope.

There is a lot to do and many people are needed to do it. Despite Levi starting a new medicine that will hopefully help keep him healthy and slow disease progression, this is not a cure and he still will have CF-related struggles. We need to do more. There are also many other people whose rare mutations of CF unfortunately do not benefit from mutation-targeted therapies. We need to remain focused to accelerate lifesaving therapies for everyone with CF so every person and every parent can share in the optimism that I now feel.

The goal is — and has to be — making CF a worry of the past. That is the future of which I dare to dream. 

I am optimistic about the future because the past shows that we can do hard things when we come together as a community and dare to dream of a better future. My optimism comes through witnessing everything we’ve accomplished as a family and the resiliency of this community. I’m excited to be part of this critically important work and to cross out CF alongside everyone in the CF community. Together, we can do this!

Author

Noah Singer is a father of twins, one of whom has cystic fibrosis. He is from Long Island and for the past decade has lived in and around Seattle. His work centers around the technology business.