Our sweet Aiden was diagnosed with cystic fibrosis shortly after birth, and the past six months have been a journey filled with emotions, learning, challenges, and incredible strength. When we first heard the diagnosis, our world changed instantly. We were overwhelmed with fear and uncertainty, trying to understand what cystic fibrosis would mean for Aiden’s future. Since then, we’ve learned more medical terms, treatments, and routines than we ever imagined possible. Daily life now includes medications, breathing treatments, enzymes with every feed, several doctor and lab work appointments, and constant attention to nutrition and overall health. What once felt intimidating has slowly become part of our normal routine. Even on the hard days, our baby continues to show us resilience, joy, and determination. There have been moments of worry — waiting on test results, monitoring weight gain, learning about mutations and treatments — but also moments of hope. We are incredibly grateful for the doctors, nurses, therapists, researchers, family, and friends who have supported us along the way. We are also incredibly grateful for the life changing treatments and medications that have become available to him in order to help give him the chance of growing up and living a relatively “normal” life. Despite the challenges, Aiden has always been a happy, loved, beautiful little baby who smiles, grows, cuddles, laughs, and reminds us every day how strong he is. Cystic fibrosis is part of our journey, but it does not define who he is. These first six months have taught us to celebrate every milestone, cherish every healthy day, and appreciate the strength that can grow from difficult circumstances. We know the road ahead may not always be easy, but we also know we are not walking it alone. 💜
My Great Strides Story
Rebecca Marquez
Fundraising for San Luis Obispo Great Strides 2026
Rebecca Marquez
8 months ago, we met our son, Aiden, for the first time - and it wasn't the quiet, easy hello we'd pictured.
We already knew something was going on before he arrived. An ultrasound during pregnancy showed a bowel obstruction, and when my husband and I were tested, we found out we were both carriers for cystic fibrosis. So we went into his birth prepared, but still scared.
He was rushed to Valley Children's almost immediately, and on day two of his life, he had bowel resection surgery. He spent his first month in the NICU, where his newborn screening confirmed what we suspected - he had CF. We finally brought him home... and two weeks later we were back in the hospital for 11 more days, this time for intestinal pneumatosis.
It was a lot, for such a little guy.
But here's the part I really want people to see: he is THRIVING.
Not long after all of that, he started on a medication called Trikafta - a CFTR modulator that actually targets the underlying cause of CF, not just the symptoms. It has changed everything for him. He's been able to come off several other medications and treatments, and honestly, he is one of the happiest, most easygoing babies I've ever met.
For anyone who doesn't know much about CF: it's a genetic condition that affects the lungs, digestive system, and other organs by causing the body to produce thick, sticky mucus. A generation ago, kids with CF often didn't make it to adulthood. Today, thanks to modulator drugs like the one our son takes, kids diagnosed at birth are looking at a completely different future - one with normal growth, fewer hospitalizations, and real hope.
We're so grateful - for his incredible care team, for the researchers and families who fought for treatments like this to exist, and for this little boy who has been so resilient through more in 8 months than most people face in a lifetime.
He is living proof of how far modern medicine has come. And we could not be more proud of him.
To keep this progress going for him and every other kid facing CF, we're going to be walking in the Great Strides walk in SLO this September. If you're able to donate anything toward CF research, we'd be so grateful - every dollar helps push us closer to a cure.
MAY
21
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