Case Study #110 - Sahil Playing Tennis

Sahil Playing Tennis

Sahil Shah was diagnosed with NF1 at a very early age. Growing up, he was constantly reminded of his condition by the various medical appointments and treatments that he had to undergo. He was embarrassed about the café-au-lait spots on his skin and frustrated by the constant chronic pain from the neurofibromas that interrupted his everyday life. He first felt “bumps” pop up all around his body at the age of nine, and he wondered why nobody around him was going through the same thing. He went into his first appointment with his NF specialist and remembers being terrified at the fact that his “bumps” were really tumors and that he had an increased risk of cancer due to NF1. As he returned home from the appointment, he made the mistake of looking up NF1 online and immediately became confused and anxious. Over the course of the next year or so, one of the tumors on his forehead continued to grow at a rapid rate, and his NF doctor decided it was time to get surgery. Surgery was very scary for him, and even though it went well, he still could not shake the images that he had seen on the internet out of his head. As the years went on, he developed plexiform neurofibromas in his neck that have often caused him to have intense migraines and headaches. he has tried explaining the pain and the frustration to his family, who have constantly been supportive of him, but because they do not have NF, they weren’t able to truly understand what he was going through.

Because of this he often felt alone in his battle with NF, with no one to explain his pain to. But one day this summer, while expressing the pain from a migraine he had the night before to his brother, we thought to each other, “What if we created a community of kids and young adults who could understand what it’s like to live with NF?”.

Prep Sketch of Sahil Playing Tennis

This is where SketchNF was born. As he and his brother searched the internet searching for these communities, they stumbled across Doodle4NF, a previous initiative created by NF Network. They saw that Doodle4NF had celebrities create drawings and auctioned them off, and they thought, “What if we adapted this concept to include members of the pediatric NF community, and instead of celebrities doing the drawings, it would be the kids themselves?” Not only would this empower children with NF by allowing them to fight for themselves and to express their own battles and emotions that have come along with the condition, but we believed that, through art and social media, we could create a wide-spanning pediatric community that would ensure no child with NF would ever have to feel alone again.

Despite facing numerous challenges and setbacks along his journey with NF, Sahil's determination remains steadfast as he continues to pursue his diverse range of interests. From playing tennis, ping pong, and pickleball, to working in a lab conducting scientific research on NF this summer, Sahil finds great joy and fulfillment in these endeavors, refusing to let his condition hold him back.”