Weronika is a sweet child full of energy and smiles, and one of the first children from Poland diagnosed with KIF1A Associated Neurological Disorder.
My daughter Weronika was born on October 20th, 2016, in Cracow, Poland.
At birth she scored the highest number on the Apgar scale – 10 out of 10. The Apgar score is an assessment of how a baby is doing at birth.
At two weeks she was put into a cast for club feet. She wore the cast for two months.
At five months together with Weronika’s dad, we noticed psychomotor delay. Weronika showed stiffness in her extremities and an inability to focus her eyes.
Besides the EEG, CT and MRI, tests were done and Weronika was diagnosed with partial agenesis of corpus callosum – a brain defect in which the two hemispheres of the brain are not connected. The brain defect may be the reason why Weronika has Cortical Visual Impairment.
Weronika makes psychomotor progress. She moves her hands and legs more efficiently, and keeps her head upright. Every day, she focuses better on objects and faces. She is not sitting alone yet, but is sitting with the help of an adult.
Weronika is intensively rehabilitated. Weronika attends various therapy, such as: NDT Bobath therapy, Vojta therapy, speech and eating therapy, vision therapy, psychology, sensory integration (SI), alternative communication (AAC-Augmentative and alternative communication).
Weronika also receives stem cell therapy. We see that her vision problems are smaller after therapy.
Despite so many activities, Weronika is a child full of energy and smiles. Every day becomes more beautiful when I see joy on her sweet face.
I believe in my daughter and that is why I am sure that Weronika will overcome her weaknesses and will be independent for some time.
Thank you for sharing your beautiful story!Your daughter must be a strong Warrior and I’m sure you are very proud of her! My granddaughter has kif1a, I enjoy hearing other families stories!!! we’re all in this fight together!