- We circled the doctors and had no diagnosis - even after many tests and hospital stays. All we heard was: "you have to exercise." And the disease progressed," recalls Teresa Brzozowska-Nieczaj, mother of the twins, Karol and Kacper Nieczaj. Today the brothers are studying history at Bialystok University, but ataxia made its presence known when they were 10 years old.
- I noticed changes in the boys' figures. They began to hunch over. The orthopedist recommended rehabilitation. Despite exercises and a corset, the scoliosis worsened, and around the age of 13 the boys' gait changed - they set their legs wide and moved with a wobbly step, their mother adds. Previously, the brothers were athletic - they played soccer, Kacper trained in karate.
Several years pass before a diagnosis is made
For 75 percent of patients, the diagnosis is made after the age of five, but before the age of majority. It is usually preceded, as in the case of Karol and Kacper, by a long trek to various specialists. If scoliosis, for example, comes to the fore, it does not arouse suspicion for a long time - many children have curvatures of the spine.
- It took six years to establish the diagnosis. We remember that day - May 6, 2019, our 16th birthday. The end of middle school, the choice of high school - due to health problems, unfortunately, not the one of our dreams, and the sight of a weeping mother. The disease wasn't so advanced at the time, so we didn't really care, but we didn't want to talk about it," Karol and Kacper recall.
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