Ania’s Life: A Daily Battle for Basic Skills and Independence

Our daughter Ania’s life has been a continuous struggle from the very beginning. Born with a rare genetic condition, her body and mind do not function like those of a healthy child. Every day is a test of endurance, patience, and courage—not just for her, but for all of us as her parents. Simple actions that most children take for granted—eating, drinking, walking, speaking, even breathing—are monumental challenges for Ania. Each success, no matter how small, feels like a victory in a war she did not choose but fights bravely nonetheless.

From the moment we understood the scope of Ania’s condition, we knew our journey would not be easy. The genetic disorder she has affects multiple aspects of her development. Her muscles are weak, her coordination is limited, and her body struggles to perform tasks that are automatic for most children. For example, when a healthy toddler reaches for a cup of water or takes their first step, it seems effortless. For Ania, these are the culmination of hours of therapy, patience, and repeated practice, often accompanied by tears, frustration, and fatigue.

Currently, Ania is under the care of a specialized children’s hospice. This may sound daunting, but it has been a lifeline for her and for our family. The hospice team provides round-the-clock support, medical care, and guidance, helping Ania work on the basic functions that define independence and quality of life. She is learning how to eat and drink safely, how to communicate her needs, how to walk, and even how to breathe more efficiently. Every milestone achieved, from taking a single step to swallowing a spoonful of food without assistance, represents months of dedicated effort.

Over the past months, we have taken Ania to three intensive rehabilitation programs focused on teaching her how to eat. These programs are not like summer camps; they are structured, highly specialized interventions that require expert supervision, adaptive tools, and constant repetition. Each day in therapy is exhausting for Ania, but it also brings progress. For instance, after the first program, she was able to hold a spoon for a few seconds and swallow small amounts of puree with less assistance. It may seem small to an outside observer, but for us, it was a breakthrough—a glimpse of what her future could hold.

The results from these programs have been encouraging, but there is still so much to do. Ania is still very young, and the earlier we intervene, the better her chances of improving her independence and overall quality of life. This means continuous rehabilitation, multiple therapy sessions each month, and the use of specialized equipment. The costs are overwhelming. Each session, each visit, each tool adds up, and while we do everything in our power to manage these expenses, we cannot do it alone.

Despite the challenges, Ania’s spirit shines through. She is small, but she possesses an extraordinary will to learn, to grow, and to connect with the world around her. When she smiles after successfully taking a bite of food or when she takes a few assisted steps, she lights up the room. These moments of joy remind us why every effort, every therapy session, and every sleepless night is worth it. They fuel our determination to continue fighting for her, no matter how difficult the journey may be.

We are constantly learning from her courage. Every day, she shows us that progress is possible, even when it feels slow or discouraging. She teaches us patience, resilience, and hope. But she cannot do this alone, and neither can we. The financial demands of her care, combined with the time and energy required for her rehabilitation, are immense. We have reached out to family, friends, and the broader community, hoping to find support for the path ahead.

Ania has so much potential to grow, to develop skills that will allow her to interact with her environment, communicate her feelings, and experience joy. But she needs the resources to do so: access to high-quality rehabilitation, adaptive tools for eating and mobility, and consistent support from specialists who understand her complex needs. Without this, her progress will slow, and the possibility of reaching her full potential may diminish.

Every donation, every message of encouragement, and every act of kindness brings us closer to giving Ania the life she deserves. It is not just about survival; it is about giving her the opportunity to thrive, to experience independence, and to enjoy her childhood as much as possible. We are committed to her care with all our hearts, but the journey is long, and we need help to ensure she receives the support and therapy she requires.

From the bottom of our hearts, we ask for your support. Stand with us in this fight. Help us give Ania the chance to develop, to smile, and to experience the joys of childhood despite the challenges imposed by her genetic condition. Together, we can help her take each step, swallow each bite, and build the skills that will shape her future.

Ania is small, but her strength is enormous. With the right care, love, and support, we believe she can continue to make remarkable progress. We will never give up on her, and we hope you will join us in this mission. Every gesture of generosity, every word of encouragement, and every donation helps bring hope, progress, and a brighter future for our beloved daughter.