In the meantime, as we continue raising funds for Julka’s treatment in the United States, we have not stopped searching for answers. Every day is filled with phone calls, emails, consultations, and new questions. We speak with doctors, specialists, and medical centers, trying to understand our daughter’s condition as fully as possible and to find the safest path forward for her fragile body.
Just over a week ago, we were at the hospital in Otwock, where a multidisciplinary team of doctors carefully examined Julka. They analyzed the possible surgical options, the risks associated with the procedures, and the potential complications that may follow. It was another emotionally exhausting meeting, filled with difficult medical terms and heavy decisions that no parent should ever have to make for their child.
And yet, despite everything she is going through, Julka remains an incredibly cheerful little girl. In everyday life, she loves going to preschool, where she moves around either in her wheelchair or in orthotics, with the help of devoted caregivers. Her smile is sincere, her laughter contagious, and her determination humbling. She is brave beyond her years and tries to cope with every challenge in the best way she can.
Julcia works tirelessly during rehabilitation sessions, fighting for every small improvement in her fitness and independence. These hours of therapy are demanding and painful, but she endures them with quiet courage. Each movement, each exercise, is another step in her battle for a future where pain does not dictate her childhood.
However, time is merciless.
A month ago, Julka underwent an MRI of her entire spine, and the results shattered us. The curvature at a critical point reached 125 degrees. This is no longer a condition that can wait. Our daughter needs surgery as soon as possible, and we still do not have the funds to make it happen. Watching her struggle with pain, knowing that help exists but remains out of reach, is a heartbreak no words can fully describe.
Julia remains under constant care from doctors and physiotherapists. She is about to undergo an intensive, week-long rehabilitation program, during which specialists will focus on strengthening her spine and legs. We cling to every form of support that can ease her suffering, even temporarily, while we continue fighting for the surgery she desperately needs.
Earlier this year, on June 1st, we had a consultation with Dr. Feldman at the Paley Institute. His words still echo in our minds. He made it clear that spinal surgery must take place this year. There is no room left for delay. During the same hospital stay in Florida, Julka’s left leg will also require another operation due to complications from previous procedures.
When Dr. Feldman reviewed the latest X-rays of our daughter’s spine, he was visibly alarmed by how rapidly her condition had deteriorated. We felt the same fear, knowing that we are still far from being able to afford such complex and costly treatment. The reality is brutal: without surgery, Julka’s chances for future independence diminish with every passing day.
Our daily life is a delicate balance between intensive rehabilitation, frequent medical appointments, and trying to preserve a sense of normal childhood. Julka goes to kindergarten, explores the world from her wheelchair, and learns alongside her peers. We do everything in our power to give her stability, joy, and hope—but we simply cannot do this alone.
Julka was born with a very rare genetic disorder known as Larsen syndrome. From the very beginning, fate wrote a different script for her life than the one we had imagined. Instead of carefree days, her world became filled with hospitals, surgeries, and endless therapy. She has already undergone two knee surgeries, and thanks to those procedures and intensive rehabilitation, she can now stand independently in orthoses and slowly move forward with a walker or with the help of a physiotherapist.
This progress once felt impossible. At the time of her diagnosis, doctors gave her very little hope for mobility. And yet, Julka proved them wrong. She attends rehabilitation sessions several times a year, spending dozens of hours each week working on her body. Every gain she makes is the result of immense effort, pain, and perseverance.
The next crucial step is hip surgery, followed by spinal surgery, which has so far been delayed due to its complexity. The hips, subluxated since birth, must be corrected first. These procedures will also be performed by Dr. Feldman, and each hip will be operated on separately. The doctor visits Poland only three or four times a year, performing surgeries in Warsaw. The next opportunity is at the turn of February and March. If we could raise funds for even one procedure by then, Julka could take a vital step forward.
Time is not on our side.
Every day without surgery takes us further away from the hope of Julka’s independent functioning. Despite fear, exhaustion, and uncertainty, we continue to believe that our daughter’s health can still be saved. All we truly want is for her to live without constant pain, to move freely, and to experience a childhood filled with dignity and joy.
We are asking you—please stay with us. Please don’t turn away. Every contribution, every shared message, every gesture of support brings Julka closer to the treatment she desperately needs. Help us fight for her mobility, her future, and her happiness.
With hope and gratitude,
Julka’s parents
