Why Walk?

This is an ongoing series that highlights those who have registered or walked with us before and their reason(s) behind joining our Steps2Cure NF walks across the northeast! Hear why they walk:


Sarah D’Arcy on being Kendall’s Mom – Wakefield

image of young girl outside in front of water in red tank top“Our journey began years before Kendall was clinically diagnosed with NF. As a baby, she was strong willed; if things weren’t right for Kendall, she would let us know. After eye surgery in preschool, she began wearing glasses and started speech therapy. Nothing slowed Kendall down! She fell in love with music and dance. In grade school, testing revealed that Kendall needed some extra help. She began working with an occupational therapist and truly gained great confidence. She started physical therapy around the same time and worked hard at gaining muscle, improving posture, and strengthening each part of her body. It wasn’t until after we received a doctor’s recommendation to see a neurologist for headaches, that we learned what NF was. Kendall was diagnosed with NF1 at the age of 8 years old. Discovering that your child has a condition like NF is beyond overwhelming. Because the disease is so complex and is different for everyone, it is difficult to understand. As a parent, it is scary not knowing what the next doctor appointment may reveal. One of Kendall’s doctors told us about NF Northeast and the organization has become part of who we are as a family. We’ve walked in the freezing cold and ran in the blistering sun to fundraise for the Steps2Cure event in Wakefield, MA all because NF Northeast is part of our support system. These activities and events have given Kendall the opportunity to meet kids like her. She has a group of friends, the NF buddies, who get together as often as they can to laugh, play and reconnect. Being a part of NF Northeast reminds our family that we are not alone in the fight to find a cure. We are focused on the present, focused on raising awareness, determined to help fund research and continue to support our NF community every year.”


Diana Cibelli – Capital District

image of smiling young girl in maroon dress with bow in hair“This is Natalia and she is 3 years old. She was diagnosed with NF1 at 14 months old through genetic testing after cafe au lait spots began appearing shortly after birth. Her NF is of spontaneous origin. At 22 months old Natalia’s doctors found an optic nerve glioma on an MRI of her brain. She continues to undergo quarterly MRI and ophthalmology surveillance of the tumor since then. Luckily, it has not needed any treatment so far. At home, Natalia is the “mother hen”, always making sure everyone has what they need and is doing ok. Her personality embodies the term pure love. Despite her own health hurdles, Natalia is the most empathetic 3 year old you will ever meet. On her worst day she will rush over to anyone in need and offer comfort. Natalia loves to sing, play with her dollhouse, and has a super soft spot for animals and babies. Her sweet personality and tenacity is an inspiration to her family everyday.”


If you want to share who or what motivates YOU, email us at cmooney@nfnortheast.org with your Why Walk? story!