When Piotruś was born, his parents were filled with hope and joy. They had a healthy son, a little boy they imagined would grow, explore, and thrive like any child. For the first six months, everything seemed normal, and life felt as beautiful as they had dreamed. But then, slowly, concerns began to surface. Piotruś showed signs of developmental delays, leaving his parents worried and searching for answers. What started as small uncertainties soon became a life-altering revelation.
After consultations, tests, and heart-wrenching anticipation, Piotruś was diagnosed with Angelman Syndrome, a rare neurological disorder affecting only about 1 in 15,000 births. This condition causes severe developmental delays, movement and balance disorders, speech difficulties, and distinctive facial features. Piotruś’s gait is unsteady, resembling a marionette as he moves with legs spread wide apart. His facial expressions, including a characteristic wide smile, a protruding tongue, and widely spaced eyes, reflect the genetic condition that shapes his world in ways most parents cannot imagine.
Angelman Syndrome affects every aspect of a child’s life. For Piotruś, each skill, each movement, each attempt at communication requires immense effort and determination. The disorder impacts his ability to walk steadily, his balance, and coordination, while also impairing his speech. Frustration often arises when he cannot express himself, leaving him unable to communicate his needs and emotions fully. Even simple gestures and pictures, which his parents use to help him express himself, are sometimes difficult for him to replicate.
From the very beginning, his parents devoted themselves fully to his care. Rehabilitation has been crucial to improving Piotruś’s balance and coordination, preventing complications such as scoliosis and muscle spasms, and helping him achieve milestones that would otherwise be impossible. Over seven years, his parents have invested hundreds of hours in therapy, sometimes accompanied by tears and frustration, yet they have celebrated each small victory with immense pride.
One of the most remarkable achievements came recently: after years of effort, Piotruś took his first steps. Today, he can move around the house with greater independence, though he still faces challenges on uneven surfaces. Every step he takes is a triumph — a testament to his determination, the love of his family, and the power of persistent care and rehabilitation.
Piotruś also draws joy and comfort from his younger siblings. Watching and interacting with them allows him to learn in ways that are both playful and developmental. Yet his parents experience the bittersweet reality of this arrangement: while Piotruś is gaining skills, the burden of care is immense. One parent had to leave their job to provide 24/7 attention, while the other manages the family’s daily needs, creating significant financial strain. Medications, medical equipment, and therapy sessions are expensive, and the family has been forced to cancel some rehabilitation sessions due to budget constraints — a heartbreaking decision for any parent devoted to their child’s growth.
Despite the challenges, Piotruś’s parents remain unwavering in their love and dedication. They refuse to give up on his potential, knowing that with continued support, therapy, and guidance, he can achieve greater communication, independence, and quality of life. Every skill learned, every milestone reached, and every moment of joy reinforces the importance of perseverance and hope in the face of adversity.
Angelman Syndrome is a condition that demands constant effort, vigilance, and care. Yet Piotruś’s story is not only one of struggle — it is also one of resilience, courage, and the deep love of a family determined to help him flourish. His infectious smile, determination, and personality inspire everyone who meets him, reminding the world that even in the face of rare and complex challenges, children can bring joy, hope, and remarkable courage.
Now, Piotruś’s parents are reaching out for support. The continuation of therapy, rehabilitation, and medical care is essential to his development and wellbeing. Without assistance, they fear they may be unable to provide the resources necessary for his growth. Your help can make a tangible difference: funding rehabilitation sessions, therapies, and medical equipment, ensuring Piotruś can continue progressing and experiencing the joys of life to the fullest.
Piotruś is more than a diagnosis. He is a courageous, determined, and extraordinary boy, and with the support of his family and community, his future can be bright, full of growth, learning, and love. Every contribution is a chance to help a child overcome the obstacles life has placed before him, and to honor the immense bravery and spirit that defines Piotruś’s journey.
“Emilka’s Fight: A Brave Little Girl Battling Emanuel Syndrome”.1799
The pregnancy was progressing normally, and there was no indication that our little Emilka would be born with any health issues. We eagerly awaited her arrival, dreaming of the moment we could finally hold our daughter in our arms and protect her from all harm. We never imagined that the challenges ahead would test us in ways we could never have prepared for.
From the very first moments of life, Emilka’s path was difficult. Soon after birth, she was diagnosed with epilepsy, delayed psychomotor development, and a congenital heart defect. She was immediately transported to the hospital in Ostrów Wielkopolski, where she spent approximately two weeks undergoing detailed tests and monitoring. It was during this time that the full extent of her condition became clear. Emilka was diagnosed with Emanuel syndrome, a rare genetic disorder responsible for many of the health complications she faces today.
Our daughter is only the second child in Poland to be diagnosed with Emanuel syndrome. From an early age, she has undergone multiple life-changing surgeries, including heart surgery, insertion of a PEG tube, placement of a tracheotomy tube, and various orthopedic procedures. Emilka’s condition is complex, and each day presents new challenges. One of the most difficult limitations she faces is lockjaw, which prevents her from opening her mouth.
Despite these obstacles, Emilka’s determination is extraordinary. Through hard work and perseverance, she has learned to sit independently. She is not yet able to walk, but with support, she can stand for short periods. Every small achievement demonstrates her resilience and courage, and every milestone is a triumph for her and for our family.
To give Emilka the best chance at improved functioning, mobility, and independence, she requires ongoing, intensive rehabilitation. Physical therapy, speech therapy, and specialized rehabilitation sessions are essential to her growth and development. These sessions allow her to strengthen her muscles, improve her coordination, and work toward skills that will enhance her quality of life. However, the costs associated with such comprehensive care are enormous and far beyond what we can manage on our own.
Emilka faces additional challenges daily. She is prone to frequent infections, struggles with breathing, and experiences difficulties with basic daily functions. She cannot speak, which makes it impossible for her to communicate when she is in pain, uncomfortable, or needs something. Watching her struggle without the ability to express herself is heartbreaking, and as parents, we feel powerless at times. Every day we worry, wondering what more we can do to help her live a safe and fulfilling life.
Despite these challenges, Emilka’s spirit is inspiring. She is a fighter, full of determination, and she faces each day with courage beyond her years. She brings joy to everyone around her and has taught us the true meaning of resilience, hope, and love. We are committed to giving her the best life possible, and we refuse to let the limitations of her condition define her future.
For this reason, we are turning to you for help. We are asking for your support so that Emilka can access the therapies, rehabilitation sessions, and medical care she urgently needs. Every contribution, no matter how small, brings her closer to the opportunity to improve her mobility, communication, and overall quality of life. Your support is our hope, and it allows us to provide Emilka with the care she deserves.
Our daughter is the most important person in our lives, and we are determined to do everything possible to give her a chance at a better future. Your generosity can directly impact her life, helping her progress in ways that we could never achieve alone. With your help, Emilka can continue to fight, grow, and experience the joy and opportunities that every child deserves.
Please, join us in supporting Emilka. Help us give this brave little girl the chance to thrive, to reach her potential, and to live a life filled with hope, love, and possibility. Every act of kindness, every donation, and every share of her story makes a difference in her journey toward recovery and independence.
Emilka’s Parents – Hohorek Family