Baylee: Our smiling, dancing, silly, strong and relentless fashion diva – the reason we speak up, the reason we fight so hard, the reason we research, the reason we walk. Bay was diagnosed with Neurofibromatosis Type 1 in August of 2015. This was determined by a genetics team at the time; based off of her enlarged head size, developmental delay, café au’ lait spots and a verified optic glioma tumor behind her right eye. NF1 also has an umbrella of other comorbidities that Baylee encounters daily such as learning disabilities, ADHD, Autism, epilepsy, severe headaches, dental and gastrointestinal issues, and autonomic thermoregulatory dysfunction – causing her to overheat easily as she physically cannot sweat, which then triggers other symptoms such as vomiting or disorientation. Her team of specialists has grown to consist of Endocrinology, Neurology, Psychology, Oncology, and a Neurosurgeon. She has endured several hardships along the way, many medication changes, increased appointments, MRI’s, EEG’s and has monthly labs drawn. These specialists have provided excellent care from the Oshei Children’s Hospital of Buffalo and DENT Neurological Institute.
Early intervention services started at home at a young age and continued through a school age program as she approaches Middle School. Baylee receives Speech, Occupational Therapy, Physical Therapy, Vison and Special Education. At home, Baylee is loved and cared for by Mom (Kelly), Dad (Michael), Bonus Mom (Shannon) and her stepbrother’s Jacob and Nathan. She is surrounded by an extensive support system filled with an immense amount of extended family and friends.
Baylee’s strength is admirable. Her contagious smile and free spirit bring everyone so much joy daily. She is an active member in The Miracle League of WNY where she plays baseball in the summer, bowls in the fall/winter months and attends other community events. A social butterfly: Baylee loves school, dance parties, listening to Taylor Swift, cheering for the Buffalo Bills at “Josh Allen’s house”, supporting her brothers at their sporting events, playing with dolls and being with family and friends. We are so proud of the fighter that she is, as she has shown an immense amount of growth this year, despite all of her medical battles.
We cannot thank NF Northeast enough for their guidance and support. This organization has become so special to us and our team, Baylee’s Buffaloes, is looking forward to honoring our fighter again at the Steps2Cure NF walk in Buffalo, NY this May. The money raised will support the mission of NF Northeast, funding patient support programs, advocacy efforts, and cutting edge research, and will provide hope and help to individuals and families impacted by NF. Every step we take brings us closer to better treatments, increased awareness, and a brighter future—thank you for your support!