Beyond the Diagnosis: How Parents Turn Pain into Strength

Cystic fibrosis is a rare genetic disease that changes the lives of not only those diagnosed but also their families. Behind every affected child are parents who are engaged in an ongoing battle, a battle often fought in silence. These parents become true guardians of their children's health, sacrificing everything to offer them a life as close to normal as possible. However, beyond the tireless care for their child, these parents carry a huge emotional burden: the pain of seeing their child suffer and the continuous struggle to find hope in a world full of uncertainties.

This is the story of a family from the Ialoveni district, where the mother shares her experience, a reflection on the trials, fears, and hopes that come with the role of being a parent to a child with cystic fibrosis.

"My life completely changed the day Sofia, our little girl, was diagnosed with cystic fibrosis at just 8 months old. Accepting this disease was one of the hardest trials I have ever faced. At first, I felt overwhelmed by the complexity of the diagnosis and the constant worries about my little one's health. The problems seemed endless, and many times I felt like I had no strength left to continue. However, out of love for my child, I got up every time, prayed, and found the energy to move forward.

The moment when a repeat test at the center confirmed the diagnosis 100% was the hardest. It was a blow that came with an enormous responsibility – the responsibility to learn everything about this disease and to find solutions to ensure my little girl could have the best life possible. Cystic fibrosis forced me to become more informed and disciplined than I ever thought I could be.

Over the course of these eight years, I have gained invaluable knowledge about medicine, genetics, and the special care Sofia needs daily. Caring for her has become a strict but vital routine. Inhalations and physiotherapy sessions are part of our daily schedule, and enzymes must be administered with every meal, carefully calculating every gram of fat in her diet. I quickly understood that hygiene must be a priority: everything she comes into contact with is disinfected, and the people around her are carefully selected – only close family members who are 100% healthy. For others, all these measures may seem unreal or even exaggerated, but for us, they are absolutely essential.

In this battle, I have not been alone. Our family is united, and we support each other. My husband has been and continues to be a constant source of support, and together we have found the strength to overcome difficult moments. Our solidarity has helped us overcome frustration and look ahead, even though we know that this disease cannot be "fixed."

Looking back, I realize how much this experience has changed me. Cystic fibrosis has shown me how strong I can be, even though I never wanted to learn this in such a way. I have learned to be informed, to seek solutions, and to constantly adapt to Sofia’s needs. Medications and new treatments are an essential part of this journey. They represent our hope – a hope we hold on to in order to give our little girl the chance to have a better life."

Unfortunately, in Moldova, the cutting-edge treatments that can change the lives of cystic fibrosis patients are not yet available. In other countries, patients are already benefiting from these innovative medications that treat the genetic cause of the disease, offering them a near-normal life.

"I deeply wish that one day Sofia's cough will disappear, and her pancreas will function normally, without the help of enzymes or other treatments. I dream of the day when she will be able to live a life without the limitations imposed by this disease.

To mothers who are going through similar struggles, I want to say that life with cystic fibrosis is not easy. It is a constant battle, but one that we can win with patience, discipline, and hope. Optimizing and organizing the day are the keys to success. Although the challenges are immense, they can be overcome with love, determination, and mutual support."

This fight is not just for the affected families, but for the entire community. Only together we can make a difference. Support is needed from society, authorities, and those who can influence access to treatments like Trikafta. Every child deserves the chance to live a healthy life, and every family deserves the hope of a better future.

"With all my heart, I hope for the day when these challenges will become just a memory, and our children will live healthy and happy lives."

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