Klara Gryczka

Klara was born in 2021. She was diagnosed with a rare metabolic disorder, Smith-Lemli-Opitz syndrome (SLOS), in which the body does not produce enough cholesterol, which is essential for brain development in utero. The diagnosis came as a shock and disbelief to us. During pregnancy, we learned about extra fingers, which could have been a sign of a syndrome, but it could just as easily have been an isolated defect… and a suspected coarctation of the aorta, which was ruled out by a prenatal echocardiogram…

And yet, Klara has the syndrome…

After giving birth, our world collapsed – instead of rejoicing at the birth of our child, we were overcome with fear, uncertainty, and helplessness 🙁 – a struggle began that continues to this day.

Klara is now 4.5 years old, and she’s already been through a lot. She spent her first two months in the hospital.

At six weeks of age, she underwent surgery to correct a coarctation of the aorta – who knows what would have happened without it.

Before she turned one, she had the extra fingers removed…

Then back to the hospital, because at 13 months of age, she had a PEG tube inserted due to difficulty in eating by mouth (she was tube-fed until 13 months). Who would have thought eating would be such “hard” work? Klara still has a PEG to this day 🙁 – unfortunately, her receding jaw and gothic palate make it difficult to eat through her mouth, but we’re not giving up.

Our SLOdziak has an intense schedule, from physiotherapy, hippotherapy, and hydrotherapy – due to her reduced muscle tone, through SI classes, sessions in a normobaric chamber to improve brain function, to sessions with a speech therapist, because she’s fed directly into her stomach through a PEG and is learning to eat through her mouth during therapy.

Klara attends rehabilitation sessions 5-7 times a year, where she has 20! hours of intense exercise each week. These sessions cost a considerable amount of money, but without them, our SLOdziak has no chance of progressing. Klara also requires expensive equipment that needs to be replaced as she grows.

Currently, Klara is sitting better, starting to crawl, and standing up. She’s making small progress, but we celebrate every success and keep fighting.

We’ll do anything for our child! We’re learning to live in this different reality, we accept and love Klara, and if there’s anything we can do to help her live life to the fullest, we’ll do it.