Anna was born naturally, exactly on the 40th week and day, as the first child. She had a beautiful, uneventful birth. There was great joy in the family.
At 6 weeks of age, during the mandatory hip and skull screening, the parents were informed that they saw ventricular dilation on the ultrasound. An MRI scan was recommended for a more accurate diagnosis.
Unfortunately, the suggestion that several areas of the brain developed differently or incompletely was confirmed: the main diagnosis was a rare brain developmental disorder, polymicrogyria. This lesion covers almost the entire brain, and the corpus callosum, the nerve fiber connecting the two cerebral hemispheres, was partially developed, but the MRI findings also showed Septum Pellucidum agenesis and hippocampus malrotation.
Based on the MRI, it is assumed that Anna was exposed to something while still in the womb, in the first trimester: Due to her mother's severe vomiting during pregnancy, she was given a "C" hazard class drug in the hospital without her consent, precisely at the time when the fetus's brain was developing. There is also suspicion that genetics are the underlying cause, although none of the tests conducted at home and abroad over the past 15 years have shown any differences.
"It was a terrible feeling, we were devastated when the doctor gave us the diagnosis during the MRI scan - while our little girl was lying in the machine under anesthesia behind the glass wall. "As a reassurance" he also said: "Mom, Anna will not be as smart as her peers and she will not be able to speak."
As a mother, frustration, sadness, fear, self-blame, anger, and similar feelings swirled within me, while I knew – knowing myself – that I would never give up, that I would fight, because why couldn't we be that one exception?
The mother did not give up, they started working with the Dévény therapy at 6 weeks old, then every existing therapy and treatment that an injured child can encounter on their journey came in a row. They seized every opportunity, sparing no time, energy or money. Over the years, the doctors have always commented approvingly on how good Anna is.
Unfortunately, a point was reached after a long journey and hard work when the parents had to realize that besides manual therapy and movement therapy, other developmental therapies were no longer needed, and the epilepsy that had developed in the meantime was kept under control by drug therapy.
Anna has become a teenage girl, so they should look for opportunities where she can fulfill herself, express herself (dancing, horseback riding, art therapy), be happy, be herself, feel useful, not get frustrated, and last but not least, educate her to be self-sufficient.
After many years of struggle, we accepted that Anna is indeed “different” and will indeed no longer speak, but for all this we are compensated by her gentle, kind being, her radiance, the incredible emotional intelligence that resides within her. She teaches us every day. She has no awareness of illness, she tolerates and accepts everything that happens to her. I feel privileged that she chose me as her mother. I know it is no coincidence! We have traveled a long and bumpy road since she was 6 weeks old, but we believe that for the rest of the journey, only lightness, joy, and happiness will be our companions and we will find Anna everything she needs most.
Let's help Anna and her family together to create a happy and safe life for this sweet, innocent little girl.
