Amelia Szymczyk

Amelia was born on April 2, 2022. Already during her pregnancy, there were concerns – growth problems were noticed, so at 37 weeks, the decision was made to terminate the pregnancy. Despite the difficult moments surrounding her birth, it was also a day full of joy and immense happiness for us – our little miracle arrived.

Unfortunately, it quickly became clear that Amelia was struggling with serious health issues. Initially, she was diagnosed with congenital cytomegalovirus infection. However, her condition and numerous abnormalities raised further concerns among doctors. After numerous tests and observations, another, very difficult diagnosis was made – Smith-Lemli-Opitz syndrome.

From the first days of her life, Amelia has faced many challenges. She lacked a sucking reflex, which made feeding difficult. She was diagnosed with an ectopic, hypofunctioning kidney, microcephaly, facial dysmorphic features, a cleft uvula, fused toes, and low muscle tone. Amelia is currently turning four. She didn’t take her first steps until she was 26 months old, and her gait is still not fully normal. She doesn’t eat independently and is fed through a PEG tube. She also has difficulty gaining weight.

Amelia struggles with a high sensitivity to changing textures, which causes her difficulty and discomfort. She doesn’t speak or communicate verbally, but as a mother, I’m learning to understand her needs and signals.

Additionally, Amelia has been diagnosed with a visual impairment and cataracts in both eyes, which requires constant ophthalmological monitoring and further treatment.

Every progress, even the smallest, is a huge success for us and gives us hope for her continued development.

Every day is a fight for her health, development, and the best possible future. Amelia requires constant care from specialists and intensive rehabilitation. Despite these challenges, she brings us great joy and motivation. We believe that with the right support, she will be able to take further important steps in her development.