“You Are An Inspiration” as told by Fernanda

Fernanda with her siblings

At the age of seven, I was put into hospice care after being diagnosed with cystic fibrosis, a progressive disease affecting the lungs and digestive system. When I was released a year later, I told everyone that this disease wasn’t going to take me. It was not my time.

Growing up with a life-threatening illness was hard on my family and me because we never knew what to expect next. I had a chronic cough, and I was hospitalized every month for weeks at a time. Friends and classmates avoided me because they thought it was contagious. The isolation was hurtful, but I learned not to let it bother me. I had to focus on my health and living the life that I wanted to. I told myself that this disease won’t control me.

I’ve always been optimistic, yet realistic. During treatments, I heard “she won’t make it” many times. But I’m not one to let others determine how I fight this disease. To that, I say, “No.”

No, because this is my life and I’m not done with it.

A strong support system is essential to my fight. My sister, brother, and parents are just that, and they have fought beside me every step of the way. They mean the world to me; their sacrifices are why I fight so hard. My dad worked to afford my treatments. My mom missed experiences with my siblings because she had to be my caretaker.

As my advocate, she made sure I also had a voice in the process. By age 12, I was wearing oxygen because the disease had progressed. I had ups and downs and we decided as a family that it was best for me to get on the transplant list. A double- lung transplant was my only hope of living longer and pursuing my bucket list.

But I was running out of time, and I couldn’t get a pediatric double-lung transplant at our local hospital. When people hear “running out of time,” they think of great sadness, but I looked at it differently. For me, this was the beginning.

My mom and I made the difficult decision to move, splitting our family in two. I had to be closer to the hospital in case I was approved for the surgery. My siblings stayed with my dad who continued to work and provide for us, and to maintain our insurance coverage. It was during this very difficult season when I met the wonderful people at There With Care.

There With Care will forever be in my heart. Not only did There With Care welcome us, but they also made my family their family.

Their consistent presence helped us feel less lonely and they supported us financially when we were really struggling. They provided endless resources and met so many of our biggest needs. Most importantly, they were there for us when we had nowhere else to turn.

After six months apart, my siblings joined me and my mom, and There With Care gave them such a warm welcome. I remember seeing their faces light up when a volunteer brought our favorite foods, books, and school supplies. And, when my mom had to take me to my doctor’s appointments, a volunteer would pick up my siblings at school. This support was such a great help to us.

There With Care was by our side every day for two years while I waited for the beautiful blessing of breath. And they were there on an early-October day when I received new lungs.

Unfortunately, I experienced some complications following the surgery; my left diaphragm and left vocal cord are paralyzed. Later, I would undergo a diaphragmatic operation, but it was unsuccessful. Now, half my left lobe is collapsed, and doctors said I will likely have less time because of the complications.

It’s common to think of a transplant as a cure, but that’s not always the case. However, I’m so thankful because I can breathe better and do things no one thought I could before. The greatest one is being with my family and living life to the fullest. I can travel, have learned to love my scars, made wonderful memories with friends, and most importantly, I can breathe!

No matter what little challenges I face, I know I’ll get through it. Even when I hear that I only have two years left to live, I respond with, “No, it won’t take me.” I’m here today, I’m 20 years old, and this fall, I will celebrate six years post-transplant. Every one of these things matter and I have so much to be grateful for.

I’m grateful for the opportunity to share my story and encourage others facing a life-threatening disease. I’m incredibly grateful for There With Care, grateful knowing they care, that they show up, and they will continue to help so many families in need.

I’m especially grateful for everyone who supports There With Care. By doing so, you are investing in kids like me and in families like mine. You are an inspiration to so many.