My Conversation with a Cystic Fibrosis Mom

Reaching out to friends who are fighters of a special challenge like Cystic Fibrosis, is something I want to do more often.

I recently met my friend Alexia for coffee. I hadn’t seen her in about a year and catching up was overdue. I met Alexia years ago thru a mutual friend. She is an expert in social media, a devoted mom to an adorable toddler, named James, and a loving wife.

As we sat down, I was nervous about asking questions about the one topic that I know Alexia cares the most about these days: Saving the lives of children who suffer from Cystic Fibrosis.

Ada: Tell me about your new gig? (I ask without meaning to sound superficial, I really want to know about her awesome new job at Verifone).

Alexia: Things at Verifone are going great! I’m enjoying my new role and the company has an exciting future ahead. Who knew one, fintech was a thing (Verifone is one of the leading fintech companies in the US), And two, who knew fintech would be so interesting!

Ada: How are you managing your home life and new job? (Alexa used to be a food critic and a blogger herself).

Alexia: It’s a balancing act. I’m the first one to leave the house in the mornings so that I can get through my day in the office and come home to play with the little one. Have some one-on-one time. So, the mornings, I let my husband take over that way he can enjoy his one-on-one time with our son. As far as extracurricular activities I used to do before baby? Most have taken a back seat. I really want to soak up every moment with James. I’m really enjoying watching him grow. It’s amazing how fast they grow! Ever since James was diagnosed with Cystic Fibrosis, it completely turned our world upside down. But it also made us realize what truly matters – family. We make it a point to have our one-on-one time with our son and as a family because you never know what tomorrow will bring. We have learned to live in the present. I’m a planner, always have been. If I could plan everything, I would! But with CF, I can’t plan and that’s been a learning curve for me. I’ve learned that I can plan as much as I can but life happens and it’s out of my control.

Ada: Tell me about your family? James is so big! (It’s the first time that I meet James, he is busy grabbing a potato chip with his tiny hands, he seems to be amused).

Alexia: The family is doing well! We are really enjoying being parents. Granted, we have a life-threatening disease that’s always in the back of our minds, but Derrick and I are a team. We make life work.

What would you like people to know about Cystic Fibrosis? I asked.

Alexia: There is so much I can say on the topic that people don’t know about the disease. But now that we’re 18 months in to being parents of a child living with Cystic Fibrosis, the greatest thing I would want people to know is it’s an orphan disease. This means that not enough people suffer from the disease for pharmaceutical companies to invest in medical research because they can’t turn a profit.

Ada: An orphan disease that we don’t hear about much, I have to say.

Alexia: There are 30,000 Americans that suffer every day from the disease – most are children. The average life expectancy is 41, which is great! But if you see data on the population’s age, you begin to see a drop off once these kids make it into adulthood. Since CF is designated an orphan disease, people don’t realize this means the medical research that’s driven by the Cystic Fibrosis Foundation is made possible because of private donations. That’s why my social feeds are so heavily focused on CF right now. To educate that without our friends and family’s donations, James wouldn’t be here with us. My son is thriving because of people’s financial support to the fundraising efforts I’m always promoting on my social media channels.

I left the meeting feeling like I had learned so much. Yet, there is much more that I can learn about CF and ways to contribute with Alexia’s efforts. I can start by listening, and by sharing her story, hence this blog post. Helping others can start simply by being curious, by caring and by being willing to listen with an open heart. I’m cheering for this amazing mom and her champion, James!

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