Recently, a letter from Laura, a nine-year-old girl fighting several diagnoses, arrived in our mailbox.
We were amazed at how, despite her difficult situation, she remains strong, how much incredible support she receives from her parents, and how she, in turn, is such an important source of strength for them.
Her story moved us, and that’s why we’ve decided to help her with the costs of her medical treatments, therapies, and rehabilitation – as these are crucial in improving her health.
A Letter from Laurinka
Hello, my name is Laura,
but my parents call me Laurinka because they love me very much. They’ve been married for 10 years, and I’m now 9. I also have a little brother, Daniel.
When I was born, I appeared to be a healthy girl without any problems. My fight began when I was 4 months old.
My parents noticed that compared to other children my age, I was falling behind. They visited several doctors who recommended that I start exercising using the Vojta method. I underwent numerous tests, blood samples, MRIs, genetic and metabolic examinations, but the cause of my health issues remained a mystery.
I still looked like a healthy child, but as I grew older, my problems worsened. Speech disorders, hypotonia, unable to walk, completely dependent, needing help from my parents in every activity.
There were small steps of progress; I was able to sit up. My parents were overjoyed that I could say “mama” and “daddy.” I kept working hard and learned to crawl.
However, finding out what was actually wrong with me was very difficult. We visited many doctors and read many articles. Finally, a doctor from Košice, who specializes in children without diagnoses, helped us. He sent my blood to Munich, where there is a special genetic center. That’s how we finally found out what was wrong. The medical term is very complicated, just like my condition: “neurodevelopmental disorder with hypotonia, speech impairment, dystonia, and orthopedic abnormalities NDHSAL, caused by a de novo heterozygous mutation of the HECW2 gene.” Only a few people in the world have this disorder.
What helps me is intensive physical therapy, working hard with a speech therapist, and frequent rehabilitation programs. Skilled people show me new exercises there, which help me make progress.
My mom and dad do everything they can to make my life better. They give me love and enjoy each new day with me. However, rehabilitation stays are expensive, and that’s why I need the support of kind people.
We may never meet, but your help could literally change my life, so I want to say THANK YOU to everyone who decides to help me.
