“For 11 weeks I sat next to her for 15 hours a day. You don’t know if your child will survive.” Kathrin Mahr talks about the most difficult time in her life. In 2019, her then two-year-old daughter suffered a heavy traumatic brain trauma. “She slipped on the ground, suddenly she pauses and just fell backwards,” recalls Mahr. What would be harmless for others became life -threatening for Valentina. Because it suffers from the glass bone disease, medically osteogenesis imperfecta.
Valentina was in deep sleep for five weeks, nine weeks on the intensive and two weeks on the normal ward. “I always told her: We celebrate your third birthday at home. And we did that.” Even today, Mahr comes the tears in the memory. It was not the first and not the last time in the intensive care unit.
Bone break at birth
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“She has been fighting since she has been in her stomach,” says her mom proudly. Valentina was born on June 21, 2016 – and suffered a thigh fracture. Even small loads can cause broken bones. “Every wrong handle can have consequences,” says Mahr. “When she was small, she had many broken bones, the last break was two years ago.” Most recently in the intensive care unit last year she was for 13 days because of pneumonia.
Valentina and Kathrin Mahr in their garden
© Kathrin Mahr
Mahr learned from the glass bone disease in the 25th week of pregnancy. “The gynecologist has found deformations on the legs,” says the 39-year-old. Valentina suffers from Type 3, a particularly heavy shape. The bones are already deformed at birth. The deformations continue. “In growth spurts, she often has very severe pain and has to take pain relievers, her muscles and tendons are shortened.”
Valentina cannot go, she currently needs help with eating. “In between, she skillfully made it, now it doesn’t work again. We often take two steps back and three,” says Mahr.
Donations request
To make everyday life easier, Mahr wants to convert the bathroom in a barrier -free manner and install a stairlifter in the Weizer apartment. Valentina currently weighs around 18 kilograms, because of her illness she is small. Nevertheless, it is becoming increasingly difficult for Mahr to wear her. “The shower belongs completely renewed and I need a way where I can put it down, a kind of changing table.” In order to be able to manage the costs, she asks for support as part of “Styrian help Styrians”.
Professional aspiration cabaret artist
Despite her restrictions, Valentina is a happy girl, visits the Weizberg elementary school, likes to play with dolls and her friends. “Valentina always says that she wants to cycle.” At the moment unimaginable, but “who knows what’s coming,” says Mahr. When she’s big, Valentina wants to become a cabaret artist. Now she all laughs.
Valentina loves her dolls
© KLZ / Nicole Stranzl
Rehabilitation and therapies
“With her humor she enchants everyone, everyone knows us on rehab,” says Mahr. You drive to Bad Radkersburg for intensive therapies twice a year. In addition, osteopathy, physiotherapy, ergo and riding therapy are continuously.
Rehabilitation is a good way to exchange ideas. “A network is important,” says Mahr. On Fridays she receives support from the family relief service. 14 hours a month were approved.
Kathrin Mahr in her garden
© KLZ / Nicole Stranzl
Mahr, who is separated from her partner, takes care of her daughter for the rest of the time. She gave up her job is a full-time mom. Despite everything, she never lets her head hanging. “Every rocky path has something nice. Without Valentina, I wouldn’t be the person I am today.”
What would you like? More support for parents of sick and disabled children. “There would be a lot more facilities, there is currently too little offer. What happens when we collapse?”
