30 DAYS/30 STORIES® 2022
My name is Emma. I am 9 years old. I am going to tell you about my little brother, Owen. Owen was diagnosed with NF at 13 months old. NF is Neurofibromatosis. NF is when you have tumors in your body. Owen has had 2 MRI’s since he was diagnosed with NF. Owen has tumors in his neck. Owen has had 3 surgeries. Owen does therapy 4 days a week. I make Owen smile every day because I know that there is no cure for NF.
Emma tells Owen’s story simply and innocently. Owen was born premature and is a twin. At 6 months old, we noticed many cream-colored spots on his body. We did our research and mentioned the spots to the pediatrician that referred us to Children’s Hospital of Philadelphia. Genetic testing was completed, and a diagnosis was given. Neurofibromatosis, also known as NF, is a genetic condition that causes an overproduction of tumors on the nerves. NF can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and disabling pain. Owen has 4 older siblings, including his twin, and he is the only one with this condition. Looking at Owen, he looks like a normal 2-year-old boy. What cannot be seen is that Owen has multiple internal tumors and works with therapy daily for other issues. There is no cure for NF and very few treatment options. Owen’s story is different than many. Owen’s story is about survivorship and giving him the best life possible for his life-long condition with an unknown future.
PCFLV has been a huge support system for our family. The relationships that we have gained are forever life-changing. Everyone has been so welcoming and understanding. No one wants to be a part of this group, but when there is no other support, PCFLV and its members have been accepting with open arms and have given joy to our family when it matters most.
Written by Owen’s Mom, Dad, and big sister Emma
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