Kenzley was just shy of her second birthday when we received her diagnosis. Leading up to that, her pediatrician had shared with us a few symptoms that seemed concerning, referred us to Children’s Hospital in Boston and kept a close eye on her. Once at Children’s, we were introduced to the phenomenal Dr. Miller- a doctor geneticist as well as the director of the Neurofibromatosis research initiative, and director of the multidisciplinary NF program at Boston Children’s. At the time, after learning who we was, we knew he had to be important… but little did we know just how important he was about to become in OUR lives. Dr. Miller watched Kenzley for a few months before deciding to send her for genetic testing. We received the phone couple two long weeks after the testing was done, and I can still remember his voice on the other side of the phone. “Mr and Mrs Sweeney, this is Dr Miller. How are you guys? We did receive the test results back for Kenzley and she does have Neurofibromatosis type 1.” Choking up, but before my wife could get a word out, he continued on, “I know it’s scary. But please know that this will not define who Kenzley is. She is a smart and strong little girl, that will never change.” And he was so right. Fast forward almost seven years, and Kenzley has never once let NF define who she is. Has there been bumps in the road? For sure. Does she need more testing than other kiddos her age? Yeah, she does. But she doesn’t let that get in the way. In fact she celebrates it… green and blue (NF awareness colors) are her favorite colors, and she enjoys telling people about NF.
As of today, her symptoms are well managed, and we are so thankful for that. She has lisch nodules in her eyes, lots and lots of café au laits, as well as a few neurofibromas that are being closely monitored. We visit Children’s a few times a year, and her team is just wonderful. We truly feel so blessed to live near one of the best Children’s hospital.
As her dad, I want to do everything I can to make her life easier. If I could take NF from her, I would. Since I can’t do that, I figured that advocating and fundraising to find a cure is the next best thing. We are so close, and to find a cure in Kenzley’s lifetime would be our dream come true. Thank you so much for all of your support.