My name is Wlmer, I am the father of Liam O. – a 1.5-year-old boy diagnosed with cystic fibrosis at 4 months old
My son’s story begins at birth with meconium ileus (a warning sign closely related to cystic fibrosis). He underwent his first surgery at five days old, during which 30 cm of his intestine was removed, leaving him with a pediatric ileostomy for 45 days until his second surgery for its replacement. We had already had genetic testing done, receiving the results when he was three and a half months old, which came back positive for cystic fibrosis. That day was one of the most difficult, filled with feelings of nostalgia, guilt, and pain, without understanding why God, as parents, had given us this very difficult life test. We were unaware of the severity of this disease, which we learned more about as the days went by. However, our helplessness grew because we saw that in our country, Ecuador, the treatment, medications, and everything our son Liam needs are very limited; in fact, most of it simply doesn’t exist. Another aggravating factor is the lack of financial resources we have to deal with such a complex illness. The state doesn’t provide everything we need, so as the months have passed, we’ve adapted to a new way of life with faith in God, searching the world, knocking on doors, hoping for a ray of light, hope, and faith that will allow us to continue caring for Liam. Now, a year and a half after our son turns 18, we realize we’re not alone in this struggle. There are other people around the world with whom we can share our experiences, to be heard, and to learn from each other. Life is more subtle when we feel we have someone else to count on.
Greetings from Ecuador to all people with CF.
Still Smiling: My Son’s Life with CF and Autism
My son Tim is 41 years old and lives with both cystic fibrosis and autism. His CFTR mutations are exceptionally rare—it’s quite possible he’s the only person in the world with this particular combination. Thankfully, the life-saving medication Trikafta works well for him. Over the years, he has undergone 18 nasal polypectomies and another major surgery. He also manages CF-related diabetes and osteoporosis. Despite it all, he’s happy—and that’s what matters most. Ronald
Family Resilience Against Cystic Fibrosis (CF)
by Olga G.
Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.
The illusion of motherhood is a feeling that is hard to describe, a feeling of unconditional love, the wonderful and incredible fact of creating life, learning to take care of another person, guiding their steps in the world, and raising a human being.
I remember when they confirmed my pregnancy and that I would have a girl, I experienced a feeling of sheer happiness, tenderness, and all those sweet experiences that awaited me. What I didn’t know was that three months after her birth, a bucket of cold water would fall on all those emotions after receiving her cystic fibrosis (CF) diagnosis.
Olga María, my daughter, was born in California by cesarean; my husband was present at her delivery and when we saw her for the first time, we both agreed she appeared tiny and fragile. My husband later confessed that he was very worried about it.
A new chapter full of challenges
A few weeks after she was born, they let us know. They had detected Olga María’s illness through the cystic fibrosis neonatal screening test. The only thing they told us was that we had to go to Children’s Hospital for an appointment so that they could explain her condition to us. We had no idea what it meant, what we were facing, countless doubts, and a sense of deep sadness arose as we found that my baby had a genetic condition.
The next challenge was to learn about the condition, its origin, implications, treatments, life expectancies and all the possible information we needed to know in order to face the situation with the best possible attitude and from a place of strength.
Since Olga María was born in the United States, this gave us the opportunity to better understand her diagnosis at three months old and to treat her condition with specialists, with access to adequate tests, treatments, and medications. In my home country, this would not have been possible.
In search of answers
As we investigated the hereditary traits and genetics of cystic fibrosis (CF), I learned that three of my husband’s first cousins were born with the condition. We also learned that access to some specialty care or medications are not prescribed or dispensed in countries other than the US. For example, the costly vibrating vest for respiratory therapy is not covered by health insurance in some countries outside the US.
The process of acceptance, self-doubt, and awareness is difficult. That is why all of us who are around people living with cystic fibrosis (CF), their caregivers, their relatives, their friends, and professionals seek empathetic and adequate treatment. We are all part of this.
Therefore, it is imperative to share experiences, testimonials, and valuable information that carries the message to as many people as possible, so they can learn everything about this hereditary condition, and how we can best provide patients the tools to lead as normal a life as possible.
Resilience and support in the Extended CF Familia
Olga María has been surrounded by support and care from everyone around her. Today at 12 years old, she administers the respiratory treatment herself, puts on the vibrating vest and turns it on, finishing her daily therapy with a resilient attitude with minimal supervision. I wish the same resilient attitude for all people diagnosed with cystic fibrosis (CF). And for those who have not yet been diagnosed and are subjected to inadequate treatments, I wish them better access to studies, the latest information about their condition, access to treatments and medications within reach and everything that can help to provide them with better health outcomes.
I am a champion of cystic fibrosis (CF), I am part of the Extended CF Familia, I take pride in being part of the community contributing to a better and supportive world. There are many hurdles along the way and much to do from the moment we join this community. Being part of a group is an important pillar within the hierarchy of our most basic needs. The Extended CF Familia makes more people living with cystic fibrosis (CF) feel heard and that means unconditional support and the idea that everything will turn out well, just like the feelings one has when embarking on the journey of motherhood.
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