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CF care as part of motherhood

By Alicia

Patient testimonials represent individual experiences and opinions of the individual patient. Experiences may vary.

My name is Alicia. My husband Peter and I have two sons. Our second-born, Marc Anthony, is 20 years old, and has cystic fibrosis (CF).

Marc Anthony started showing complications since birth. Being the second child, I could tell the difference in his development compared to his brother: he was hungry all the time, he was thin but with a distended belly, and he exhibited breathing and digestive problems.

At the beginning, doctors diagnosed him with many other problems without proper tests until he started presenting breathing issues. Even then, he was diagnosed with asthma.

Every diagnosis led my husband and I down a frustrating path of hit-or-miss diagnoses probably because a CF diagnosis was immediately discarded just for being Hispanic. Also, his pediatrician at that time was young, and he didn’t have much experience with CF.

Marc Anthony was finally accurately diagnosed with CF at the age of six.

Facing the diagnosis

Initially, I thought dealing with my son’s medical needs was something I could simply add to my standing to-do list given that when one becomes a parent, one simultaneously enters the role of caregiver. However, for parents of children with a chronic illness such as CF, the role of caregiver takes on a whole new meaning.

As I immersed myself in the caregiver role, it was sobering to discover the extraordinary demands it placed on my time and physical and emotional energy. Soon it became impossible to downplay the strenuous implications of dealing with what felt like a constant juggling act: endless medical appointments, insurance bills, prescriptions, medical equipment, and daily treatments. That was when I decided to go on a quest to find caregiver support, and thankfully, discovered that I was not alone. The CF community includes a robust ecosystem of caregivers consisting of dedicated doctors, nurses, specialists, researchers, pharmaceutical companies, and CF patients and their families.

The art of caregiving

Over time, my approach to caregiving has morphed from checking tasks off a to-do list to adapting to a new way of being. At a certain point, effective caregiving is no longer about doing more, it’s about caring more for what you’re already giving. This begins with remembering to care for myself and to nurture my resilience; that precious resource that enables me to care for others. I’m better at loosening the grip on the way I think things should be. This enables me to stay open to receiving and learning from what life brings so that I can continue to evolve along with my son’s needs.

I have chosen to embrace my role as a caregiver by aligning opportunities within the caregiver ecosystem with the things that I’m skilled at and enjoy doing. The more involved I become in the ecosystem, the more nourished and equipped I feel to support myself, my family, and others on a similar journey. Caregivers give care through sharing their time, skills, and energy. As individuals, our capacity is limited, and one can only give so much.

Accompanying others in their CF journey

Looking back at 2008 when Marc Anthony was diagnosed with CF, I could have never predicted how my journey as a caregiver would evolve. Over the last years I’ve transitioned my professional skills and expertise to serve others as a resilience coach and a mindfulness meditation teacher through my practice called BeingWell.life.

Also, for the past 10 years, my husband and I have been involved with the annual Cystic Fibrosis Research Institute’s (CFRI) National CF Education Conference. I currently serve as a member of the CFRI Diversity Committee and the CFRI Embrace Mothers Retreat Planning Committee. Simply mentioning the Embrace Mothers Retreat brings a smile to my face. This event has shown me that amidst the adversity of a caregiver’s journey, it is possible to experience joy and fulfillment from building loving, connected relationships with others who can relate.

I’ve also led the creation of a Parent Advisory Council at the CF Care Center at Children’s Hospital of Orange County (CHOC). And have served as a CHOC Parent Partner on the national Cystic Fibrosis Learning Network.

Now, as part of The Extended CF Familia, I continue to share and receive through an inclusive platform that is mindful of a diverse CF community and committed to addressing our needs. I am encouraged by the collaborative relationships emerging between members of the robust ecosystem to lead to better health outcomes for those living with CF.

A bright future

There was a time when Marc Anthony was around 14-15 years old, when he realized he had a life-threatening disease, and he thought he was never going to go to college or get married. Now, he is a sophomore in college studying real estate finance and law. He wants to do business law, he is investing, saving money, and these are all signs that he is preparing for the future.

His strict routine with medicines, workout, and vitamins have allowed him to live a typical life in all aspects: school, exercise, and even part-time jobs.

Each day I feel more content and fulfilled than ever as I look forward to learning from and supporting others, as I feel blessed by all that I’ve received. I’m inspired by the possibilities that lie ahead.

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Resource Links

Support Group for the Spanish-Speaking CF Community: Second Wednesday of Every Month

Led by Marilyn Calderon, LICSW
The group meets on the second Wednesday of every month from 5:00 to 6:00 pm PT (8:00 to 9:00 pm ET), and addresses the unique issues faced by Hispanic/Latinx individuals and families affected by CF. The group is open to adults with CF as well as family members of adults and children with CF. The group meetings are held in Spanish and facilitated by Marilyn Calderon, LICSW.

To register, click here. Please allow 3-4 hours before the meeting to register.

Sponsored by Vertex Pharmaceuticals, Chiesi USA, Genentech, Viatris, Gilead Sciences, and private donors.

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