Ola Rafacz

Ola was born on January 26, 2010, earlier than expected, in the 36th week of pregnancy. She weighed just 2280 grams. During the pregnancy, there was no indication that our daughter would be ill. We awaited her birth with joy and peace, unaware of the difficult journey ahead. Ola was born in a hospital in Zakopane. She received only a 1 on the Apgar scale. On the third day of her life, she was transported to the Children’s Hospital in Kraków-Prokocim, where a thorough diagnostic process began. It was there that we received the diagnosis – Smith-Lemli-Opitz syndrome – a rare genetic disorder we had never heard of before. She was diagnosed with low muscle tone, abnormal thumb positioning, fused toes (second and third), and a cleft hard and soft palate. For the first few months of her life, she was fed through a feeding tube. Every day was a fight – for her health and for every, even the smallest, progress. Today, Ola is 16 years old. She has undergone cleft palate surgery and two foot surgeries. Since birth, she has been under the care of numerous specialists. She doesn’t speak, doesn’t eat independently, and only moves with the help of two people. She requires constant, 24-hour care. The moment we learned of our daughter’s illness was a huge shock. We were overcome with disbelief and fear – our family had never had a history of genetic disorders, and nothing foreshadowed such a difficult reality. Despite all the difficulties, Ola means the world to us. Every day she fights to the best of her ability, and we do everything we can to provide her with the best possible care, rehabilitation, and a sense of security. Her daily life is a constant struggle, effort, and tremendous strength that teaches us humility and appreciation for even the smallest progress.