As this year comes to an end, we reflect on the positive, the happy, the success stories of our NF Community – the stories that put a smile on your face even during these dark days. Today, we ask that you support our Success Story Initiative by giving what you can, so that we can continue to make happy stories for those affected by neurofibromatosis.
Needless to say, 2020 has been a challenging year. But, for my (15-year-old) Riley, who has NF1, it has also been a year of adjustment, hope and gratitude. Of course, there are the changes we are all dealing with, staying home, seeing family and friends less frequently, and learning via zoom. Thankfully, Riley has been able to keep a positive attitude regarding the current situation and her health and focuses on the joys in her life. She spends a good amount of time online with friends and TikTok (despite facial disfiguration and with one video hitting nearly 2 million views), and the laughter I hear down the hall from this brightens my days.
Riley was also able to enjoy outdoor sports this past summer/fall to keep herself busy and her spirits up. As a softball catcher she put in countless hours behind the plate, even with the extreme summer heat, and cooled down between games and practice by swimming in our pool. Additionally, she hits her volleyball off the house quite frequently as she prepares for the (hopeful) high school volleyball season. But most importantly, this summer Riley made the independent and courageous decision, despite the pandemic, to start taking chemotherapy on a clinical trial to try and shrink her 3 plexiform neurofibromas. Riley has been seeing her oncologist every 2 weeks, and although she understands the seriousness of her situation, she is able to find the ‘distractors’ in her situation by hoping to see the ‘cute phlebotomist’, and by talking hair, make-up and clothes with her nurse and doctors.
Me, I sit back and watch, hopeful and thankful for my amazing and brave daughter, thankful for the medical team who cares for her, and thankful for Neurofibromatosis Northeast for being there to support Riley and my family over the past 10 years.
We Will Make the Best of It! This one phrase has been heard by many of us this year coping with the unknowns associated with Covid-19. Ten years ago, our newborn son, Ryan was diagnosed with neurofibromatosis 1 (NF1). Our mystery ride into the world of NF began with a lot of worry and fears of the unknown as well. Due to complications of NF, Ryan’s right leg, below knee was amputated just shy of two years old. At 5 years old, Ryan received chemotherapy treatments to shrink an optic glioma that took away some of his vision.
Ryan has not been dealt an easy hand in regard to NF. However, if you meet him or see him playing out on a soccer field, you may not believe that this is the same kid I just described above. He can boot the soccer ball with his prosthetic leg, dribble a basketball with ease and chase down the opponent in football. Ryan has a smile that can light up a room and his sense of humor just follows. He wakes up every morning singing his favorite tune, as he is hopping around the house on one leg. As he is getting ready, he is usually talking about how his team is going to play to win their big game on Saturday or how many points he still needs to win his fantasy football week. He does not ask for help and never complains. His typical day includes some type of sporting event whether it is soccer, basketball, or football. He is passionate about his sports on and off the field. Many of his coaches have said, “Ryno” leads the team in spirit. He portrays a sense of confidence that many people work on their whole lives to have. When I asked Ryan…How do you feel about having NF? He paused and simply stated, “Mom, sometimes, I forget I have it!” Ten years later, the path neurofibromatosis leads us down will always be unknown, but “We Will Make the Best of it”!
Amelia is 9 years old. Amelia has NF type 2 and has or had brain tumors, spinal tumors, peroneal nerve tumors, cataract, and café-au-lait markings. We call Amelia our little saint because she is the kindest, good natured, all giving soul. She once brought home a small tootsie roll from school she had won as a reward and asked me to cut it into thirds to share with her brother and sister. She loves all things outside including sports, bike riding, and playing with her younger siblings.
As 2020 winds down it is easy to reflect on all the negatives that have happened and all the challenges we have all experienced this year. But this is just not my style and I would prefer to reflect on my daughter Leah. Leah was diagnosed with NF2 13 years ago when she was 7. Since that time, she has experienced many surgeries, setbacks and challenges, but this is not what defines her! Leah has always been an excellent student and graduated high school near the top of her class. She is currently in her junior year at Niagara University majoring in Social Work and minoring in Deaf Studies and American Sign Language. Leah works part time at a nursing home as an aide on a dementia unit, and jokes that the people she cares for have similar hearing and balance issues as she does, so they connect on the same level. She is also a volunteer Emergency Medical Technician at a local ambulance company and an accomplished outdoorswoman who hunts, fishes, hikes and kayaks.
Everything Leah does, she does to the best of her ability and with a smile. I think what truly amazes me about Leah is her bravery and outlook on life; she lives for the here and now and does not dwell on the past or what could be! At a time when we hear people complain of COVID fatigue 9 months into a pandemic, complain about missing a Thanksgiving dinner, or needing to quarantine for a period of time to keep those around them safe, I wish people would appreciate what, and who, they have now and will be there in the future.
Leah is deaf in one ear and at some point, could be completely deaf. For a 20-year-old this has to be terrifying! And, I am sure that Leah is worried and afraid about a life of silence. However, she does not complain nor ask “why me!” She just keeps smiling and preparing herself for when this could happen. Her big concern is, will she be able to get her master’s in Social Work before she is deaf, and where will she be able to work as a deaf counselor? Complaining, being negative, or feeling sorry for herself are just not attributes that Leah exhibits. This is why I admire Leah so much and why she is not only my daughter, but my hero. Let’s all take a lesson from her and stay positive during these challenging times.
This is Cam. He is six and was diagnosed with NF 1 at birth. Despite developmental and medical challenges, Cam has continued to thrive during this time of quarantine. His educational team is pleased with his progress! While Cam can’t give his famous hugs during this time of social distancing, he lights up the room with his smile and laugh and brightens the mood for his friends and teachers with dance parties and air hugs at school! Even COVID-19 quarantine can’t bring this NF star down! Keep smiling, Cam!
Deniro is our family’s hero! He is a 13-year-old NF fighter, who doesn’t let anything stand in his way. He is a typical sibling, who laughs, plays, and teases his brother and sisters. He is the planner of our family, always putting together itineraries and taking care of the who, what, when, where and why to make our family adventures memorable. While doing all of this, Deniro has been lucky enough to participate in a clinical trial to see if it will help shrink his plexiform neurofibroma. We are thankful for his amazing medical team and for all of you who have donated to NF. Without these contributions research wouldn’t be possible. We are beyond thrilled to report that since starting the clinical trial, his tumor has shrunk 35%!