Appreciate Every Single Smile: Navigating Life with CF

From time to time we invite guest bloggers who are part of the Emily’s Entourage (EE) community to contribute their unique voices to our blog. In honor of May being Cystic Fibrosis (CF) Awareness Month, we would like to showcase individuals directly affected by this disease in our #CFStrong series. Today’s guest is Loreto Feliu, a woman living in Madrid with a young daughter who has nonsense mutations of CF. Read on as she describes the heart-wrenching reality of her child’s diagnosis and the prospects that keep her optimistic.

My name is Loreto. I am 29 years old, I live in Madrid, Spain, and I have a 10 month old CF fighter. My baby was diagnosed when she was 3 months old, and it definitely was very hard for my husband and I because we thought the screening didn’t find anything. It turns out it was just misplaced, and that’s why it took them 3 months to call us. It was the day after we baptized her when we found out.

You learn to live for the moment, but always be very intensive with the treatments, physical therapy, etc. 

At that time, we didn’t know anything about this disease and words like “genetic,” “chronic,” and “degenerative” were devastating for us. But time goes by, and I think that you learn how to live with it. You try to think less about the future, which is extremely hard, and you appreciate every single smile, kiss or cry of your baby. You learn to live for the moment, but always be very intensive with the treatments, physical therapy, etc.

We feel very lucky because our daughter has an amazing team of doctors. Here in Spain we have free access to treatments, what we call “universal healthcare,” which is paid for by our taxes. And there are different hospitals that have special units for CF. Our unit is at Ramon y Cajal Hospital in Madrid. The unit includes many specialities: pneumology, gastroenterology, nutrition and physiotherapy. As of today, they are like a second family to us. They are very close and keep us informed as much as they can.

 

In the beginning of my baby’s life, we were totally lost because we didn’t know anything about the disease and we had a lot of information to process. We started looking for answers, and also searched online for people with nonsense mutations to see how their lives were. But we didn’t find anyone. We continued with our search, and one day we found hope. I saw an interview with Emily, from Emily’s Entourage where she spoke with Dr. Marty Solomon about the RARE study, which works to collect cells from people who have 2 nonsense mutations of CF.

We are together in this fight, and we will be by her side to help, support and finally find a cure or treatment for CF and specifically for nonsense mutations. 

My husband got in touch with Emily right away. Since the beginning, she was a reference to us, and we really feel like she is a very close person to our family, like a cousin that we have in the US although we haven’t met in person yet. We are together in this fight, and we will be by her side to help, support and finally find a cure or treatment for CF and specifically for nonsense mutations.

One of our biggest efforts comes when we try to normalize our day-by-day. Sometimes it can be really tough. With a baby, you never know how the treatment is going to go, especially with the nebulizers, because she gets really upset with them. We have to do everything to entertain her in order to avoid her crying and that breaks our heart.

 

Nowadays we do the treatments twice a day and we spend about an hour with the nebulizers and the physical therapy. It is now a part of our routine, but I have to admit that at the beginning, it was very hard, and today many times it still is. You see so many medicines, and every treatment is like a strange and huge monster. But you have to let this monster become a part of your life and live with it. And you have to realize that your daughter will not have a “common” life, but she can definitely be a happy person and live her life quite normally, apart from the treatments of course.

For us it has meant also a change regarding work. I decided to quit, and I will try to get back to work when she starts school at age 3. My husband reorganized his whole company so that he can work from home in the evenings and be with us. All these changes have helped us cope better with CF. But of course it is an ongoing process, and there are great obstacles ahead. Our hope is that, thanks to research like the ones funded by EE, the solution, or at least the right treatment, will be found soon.

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