Leo was diagnosed with NF1 at 9 months old - a condition brand new for our family. We were devastated, of course, but soon promised ourselves - and Leo - that we were not going to live life in constant worry. We learned all we could about NF, connected with an NF medical team, and do our best to live a "normal" life in between medical visits, facing challenges as they come up rather than dwelling on the "what ifs". It's easier said than done some days, but looking forward, PAST NF is the only way.

In 5 short years, Leo has already faced so much. When he was just 2, we discovered a hypothalamic tumor that had doubled in size in 4 months, therefore requiring a year of chemotherapy treatments and weekly trips to the hospital. Thankfully, that tumor remains visually imperceptible on MRI scans, and he was just cleared to scan again in one year! Last fall, we discovered a plexiform neurofibroma on his right side, and although it is growing, it's not currently causing issues. That MRI scan also confirmed a tumor between his lung and his rib cage. We are watching and waiting to see if/how these develop, one of the hardest challenges of living with this disease. Leo's growth has also recently slowed, so he will soon undergo tests to determine if treatment is recommended. He has always had low muscle tone, and while he eventually catches up to his peers, he has required PT, OT and Speech services for most of his life. Having met other parents to kiddos with NF or other rare diseases, we know it could be much worse, and we are grateful for every achievement, large or small.

And through it all, Leo is FULL of life. At 5 years old, he is resilient, eager to learn and try, hardworking, incredibly imaginative, sensitive and ridiculously silly. He emanates joy and has formed powerful connections with so many people around him, young and not so young. NF may limit him in some ways, but it's clear that he has special gifts that make his life rich, fun and fulfilling. It is a privilege to live in Leo's world.