I am Renata, Bartosz’s mother. My son has reached the age of 18—an important milestone into adulthood. However, for Bartek, this transition carries a significant burden, one that has been present since his infancy. While his peers have navigated childhood with fewer obstacles, Bartek’s journey has been profoundly influenced by an illness that has altered our lives forever.
Currently, Bartek is enrolled in a technical school where he studies programming, a field he is deeply passionate about. Despite the daily challenges posed by his condition, he relentlessly pursues his dreams. Yet, his reality is a continuous struggle, a battle not just for his health but for his independence, future, and the ability to fully experience life.
The Diagnosis That Altered Our Lives
When Bartek was just a year old, we received a diagnosis that shattered our world. He was diagnosed with spinal muscular atrophy (SMA)—a progressive, degenerative condition that gradually diminishes his strength, weakens his muscles, and makes even the simplest tasks, such as breathing, swallowing, and moving, incredibly challenging. This moment marked the start of a new life—one that no parent should ever have to endure.
From that day forward, our lives have centered around fighting for every breath, every movement, and every chance to slow the progression of this devastating illness. However, SMA is not Bartek’s only hurdle. He also contends with von Willebrand disease, a blood clotting disorder that complicates his situation further. Even minor injuries can be life-threatening due to his inability to form blood clots properly.
Additionally, Bartek suffers from a spinal curvature that causes him constant pain, further restricting his mobility and independence. He struggles to feed himself and relies heavily on enteral nutrition, which has become a crucial part of his daily routine. Bartek spends increasing amounts of time on a non-invasive ventilator to assist with his breathing, which supports him for about 12 hours each day. These are the harsh realities of his life—realities that those in good health may find difficult to understand.
Persevering Through Challenges
Despite the overwhelming challenges, Bartek remains undeterred. Each day, he confronts limitations that most of us can scarcely imagine, yet he continues to push forward with an indomitable spirit. His enthusiasm for computers, technology, and programming has motivated him to pursue a path in technical school, where he is diligently working to complete his education. He aspires to work, gain independence, and lead a fulfilling life, despite the hurdles his illness presents.
As his mother, I look at him with immense pride. His resilience and determination to pursue his dreams, regardless of the difficulties he faces daily, inspire me continually. However, alongside that pride comes a profound sense of anxiety and fear, as I understand that without proper care, ongoing rehabilitation, and access to essential treatments, his battle against SMA will only become more arduous. His health could deteriorate rapidly without the necessary support and resources to manage his condition.
A Lifelong Struggle with Financial and Emotional Burdens
Bartek’s daily existence revolves around a complex network of physical and respiratory rehabilitation, medical appointments, specialized equipment, and constant care. The financial strain of his treatment, rehabilitation, and medical costs is overwhelming. Regular therapies, necessary equipment, and transportation for medical visits all demand significant funds—resources that are difficult to secure in our circumstances.
We are doing everything possible to support Bartek’s health, but the truth is that without your assistance, it is a challenging endeavor. The rehabilitation equipment that Bartek urgently needs, the ongoing care, and the treatments that could prolong his life and enhance his quality of life—none of this is feasible without external help. As a mother, I worry about the future and the impact this illness will continue to have on my son, but I also believe that with support, we can provide him with a fighting chance to live a life of independence and dignity.
A Request for Assistance: Advocating for Bartek’s Future
Thus, as his mother, I am reaching out to you with all my heart for your assistance. I am uncertain how much longer my own health will allow me to cherish my son’s smile, but I know that with your support, we can gain precious time. Time for treatment, time for rehabilitation, time for Bartek to live his life with the hope of a brighter future. With every donation, every share, and every kind thought, we move closer to providing Bartek the life he deserves—a life where he can pursue his passions and dreams despite the challenges his illness presents.
Your support means everything to us. Each contribution, no matter how small, plays a crucial role in the fight for Bartek’s future. It brings us closer to the possibility of granting him more time to live, to breathe, and to chase his dreams. I am deeply grateful for your support, your kindness, and for being part of our struggle. Together, we can make a difference and help Bartek lead a life filled with hope and opportunities.
A Mother’s Appreciation
Every day serves as a reminder of the value of life, and I am incredibly thankful for the love and support we have received thus far. However, the journey ahead remains long, and we need your assistance now more than ever. Please help us continue this fight for Bartek’s health and future. With your support, we can provide him the opportunity to live the life he deserves. Thank you for standing by us.
