Stellinka - As of 31/7/2024, 25,000 crowns were collected for Stellinka.

The name Stella is of Latin origin and means “star” in translation. And Stellinka certainly is one. She was born 5 years ago. We were expecting the arrival of a healthy little girl. Nothing suggested it would be any different. All genetic tests were normal. The change came in the last month of pregnancy, when we were referred to the University Hospital in Olomouc because of fetal growth restriction. The causes of growth restriction are varied. Most often, they are problems on the side of the placenta. The doctors kept reassuring us that there was nothing to worry about. But a month after Stellinka’s birth, a series of examinations related to her unusual development began.

After six months, Stellinka was diagnosed with mosaic trisomy 9. Trisomy is characterized by an extra chromosome in some of the body’s cells. It very much depends on where the trisomic cells occur in the greatest number, which is why every child is unique. There is nothing that is common to everyone. The cause of this genetic disorder is currently unknown. Worldwide, up to 1,000 people live with this condition. No one can tell us how her development will continue. Every child is an original.

In Stellinka, the condition manifests itself in breathing difficulties, delayed psychomotor development, inability to swallow orally, epilepsy under control, and an open neck opening after tracheostomy. Since birth I have been in hospitals intermittently — repeated lung infections, problems with the central venous port, which was surgically removed in December 2020, an attempt to close the tracheostoma, a dislocated hip joint.

Despite all this, we try to exercise intensively, because Stellinka still cannot sit up by herself. She is able to sit in a special chair or with back support. We attend special neurorehabilitation in Hranice na Moravě, where we exercise in a special TheraTogs suit under the guidance of experienced physiotherapists. Since 2021, we have also started osteopathy exercises, which have moved us forward significantly. We regularly visit a speech therapist — we are learning to swallow, a vision therapist, a neurologist, a pulmonologist, an orthopedist, and an eye doctor. In 2022, Stellinka underwent a demanding five-hour hip surgery, during which the joint was fixed with 5 screws. This year, an operation on the open neck opening after tracheostomy awaits us.

Over five years, progress is visible. It is not as significant as in healthy children, but any small step forward is a small miracle for us. Stellinka is an incredibly strong little girl with a will to live. Our goal is to support her and help her move forward as much as possible so that in the future she will be able to stand on her own feet, eat by herself, and play with her siblings and other children. We still strive to push the boundaries of what we can do. Thanks to Stellinka coming into our lives, we have learned that the word “impossible” does not exist, and that “love” and “health” are the most important things in the world.

Thank you for standing by us and supporting our “LITTLE STAR”.