Although Kennedy has several visible birthmarks and other symptoms, she remained undiagnosed until she was 6 years old. During a routine checkup with a new pediatrician, the doctor noticed the birthmarks and several neurofibromas (small, fatty lumps). This led to questions about her health history and research into the family’s medical background. Upon learning that her maternal grandmother had a brain tumor at 31 years old and the shared familiar symptoms of similar birthmarks and neurofibromas, the pediatrician recommended the family see a geneticist and have blood tests to determine whether Kennedy has a form of Neurofibromatosis (NF).
The results were positive and Kennedy was diagnosed with NF Type 1. Based on the similarity in symptoms, it has been determined that Kennedy’s younger sister (Nora), her mother and grandmother all have NF Type 1. The diagnosis has helped explain health issues that Kennedy has experienced over the past few years including birthmarks, headaches, vision problems, slight scoliosis and delayed growth. The family feels fortunate that Kennedy has not experienced some of the more debilitating symptoms of NF Type 1, and rest easier knowing Kennedy’s team of doctors are proactively monitoring her health for any changes in tumor growth.
Kennedy is a compassionate little girl, and wants to do all she can to help others. She has been active in Cheerleading and last year she put her skills into action and began raising money for NF. Kennedy started a Cartwheel-A-Thon benefiting Texas NF, and plans to continue it every year to raise awareness and funding towards a cure.