Stellinka - As of 31.7.2024 25000 crowns were collected for Stellinka.
The name Stella is of Latin origin and translates to "star." And Stellinka is definitely our star. She was born 5 years ago. We were expecting the arrival of a healthy baby girl. Nothing indicated that things would turn out differently. All genetic tests were normal. However, in the last month of pregnancy, we were referred to the hospital in Olomouc due to fetal growth restriction. The causes of growth restriction are varied. Most often, they are issues related to the placenta. The doctors kept reassuring us that it was nothing to worry about. However, a month after Stellinka's birth, a series of tests began, related to her unusual development.
After six months, Stellinka was diagnosed with Mosaic Trisomy of chromosome 9. Trisomy is characterized by an extra chromosome in some cells of the body. It really depends on where the trisomic cells are most abundant, which is why every child is unique. There is nothing common to all cases. The cause of this genetic disorder is currently unknown. There are fewer than 1,000 people worldwide living with this condition. No one can tell us how her development will progress. Each child is an individual.
In Stellinka’s case, the disease manifests in breathing difficulties, delayed psychomotor development, inability to swallow orally, resolved epilepsy, and an open entry to the throat after tracheostomy. Since birth, I have intermittently been in hospitals – repeated lung infections, problems with the central venous port, which was removed in December 2020, an attempt to close the tracheostomy, a dislocated hip joint.
In all of this, we try to exercise intensively because Stellinka still cannot sit by herself. She is able to sit in a special chair or with support for her back. We attend special neuro-rehabilitation in Hranice na Moravě, where we exercise in a special Thera Togs suit under the guidance of experienced physiotherapists. Since 2021, we have also started osteopathy, which has significantly advanced her progress. We regularly visit a speech therapist – learning to swallow, a visual therapist, neurologist, pulmonologist, orthopedist, and ophthalmologist. In 2022, Stellinka underwent a challenging five-hour hip joint surgery, where five screws were placed to secure it. This year, she is scheduled for surgery to close the open entry to her throat after the tracheostomy.
Over the past five years, progress has been noticeable. It’s not as significant as with healthy children, but any step forward is a small miracle for us. Stellinka is an incredibly strong little girl with a desire to live. Our goal is to support her and help her progress as much as possible so that in the future she will be able to stand on her own, eat, and play with her siblings and other children. We are still pushing the boundaries of our capabilities. Thanks to Stellinka coming into our lives, we have learned that the word "impossible" doesn’t exist, and "love" and "health" are the most important things in the world.
Thank you for standing by us and supporting our "LITTLE STAR."
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