The story of Vicky
Our story began December of 1996 when our second child began with symptoms of pneumonia at the age of two. She was struggling with her health and it would be almost two years later and lots of hospitalizations that she was diagnosed with a rare disease LYG. Her disease continued to progress and she suffered brain and lung issues resulting in needing chemotherapy and radiation. We did these things over and over as she would come in and out of remission from the disease processes. Her disease has continued to cause her problems with her health but right now she is stable.
Our youngest daughter began having issues in the summer of 2020 which put her in the hospital with fevers and nodules in her lung like her older sister. She also had some serious issues with her kidneys. After a long hospital stay she had DNA testing and it was found that she suffered from HLH. Her older sister was tested subsequently and it turns out that she was misdiagnosed with the LYG and her diagnosis was changed to Primary HLH. It’s been many years of health struggles but we are grateful to finally have some answers. It’s important to share our stories and hopefully it will help others.