Eye Support Freya

At Freya’s 8 week well child visit her doctor noticed a reflection in her right eye. He immediately referred us to osf pediatric ophthalmology who diagnosed her with a congenital cataract. After much discussion, we decided to reach out to Ann and H. Luries Childrens Hospital of Chicago for a second opinion and in less than 24 hours of reaching out to them they contacted us to come in that day. They informed us that she was misdiagnosed. We heard the words no parent should ever hear, your baby has cancer. Retinoblastoma is a cancerous tumor in the eye that affects 1 in 20,000 and only 200-300 cases in the US per year. Our biggest fear originally was that she would be blind in her right eye, now it was that the cancer had spread to her brain. She was diagnosed with a group e retinoblastoma which is the worst grading. The tumor had taken up over 80% of her eye and within days of our consult we were back in Chicago to remove her right eye. This lifesaving procedure was our only option. Now we await on lab and test results to determine our next steps for chemotherapy. As you can imagine we are keeping Freya’s care in Chicago and they will be closely monitoring her remaining eye and the spread of cancer. We will be having multiple trips to Chicago for many years with oncology and ophthalmology. The silver lining in this diagnosis is that in 6 years the risk of retinoblastoma affecting the remaining eye dramatically reduces. We greatly appreciate our wonderful support system of family and friends. You’ve lifted us up in our darkest hour, but Freya’s fight has just begun. Your donations will be used directly for her extensive medical bills, travel expenses, and time away from work. Thank you for your support!