Ryan is a grade ten student from Vancouver Island, living with Neurofibromatosis Type Two (NF2). He loves video games and sports and is a walking encyclopaedia when it comes to sports teams and players, especially hockey. Ryan’s favourite team is the Washington Capitals and he even had a Make-A-Wish trip granted to meet his favourite player, Alexander Ovechkin.
Ryan’s mother, Simone, shares her son’s experience living with the disorder and how it has affected his and their entire families’ lives.
“Ryan was seven years old when he was diagnosed with NF2,” shares Simone. Initially he was misdiagnosed with Cerebral Palsy due to the symptoms he was experiencing. “He was falling down all the time, and after bringing him to the foot specialist, it was found that his entire left side was very weak.” She recalls wondering why it was taking her son so long to learn to tie his shoes and button up his own pants. “He had compensated so well with his right side that the weakness on his left side went unnoticed.” Ryan was put into casts and then into a brace to correct his walking, but by the end of the summer things had gotten worse. “His first day of school he could not even hold his head up to sing O Canada,” Simone recalls. It was after this incident that Ryan was rushed in for an MRI where a tumour the size of a grapefruit was discovered to be compressing his spinal cord. “He was rushed into surgery.” Unfortunately, this surgery was not the end of Ryan’s fight with NF2; throughout the years, more tumours have appeared and continuously grown. “His journey with NF2 has been one that has been a struggle at times, but one that has thankfully been closely monitored by the many amazing doctors he has seen.”
Simone recalls how difficult the first few years of Ryan’s diagnosis were on her family. “Our younger son had to go on the back burner many times while dealing with surgeries or appointments for Ryan. You can imagine the strain dealing with a sick child has on a relationship. I cannot speak for everyone in the family, but for me, it has made me realize that nothing in life is guaranteed, especially your health.”
Simone hopes that her son’s future will be fulfilling and filled with happiness. “I remember when he was born, counting his little fingers and toes and counting my blessings that we had a healthy baby, and while things did not turn out the way any parent would ever imagine or want, he is here with us and he is a handsome and strong young man. I hope that as he becomes an adult he finds someone wonderful to share his life with and to be by his side throughout this journey and to make him always look up and live life to the fullest.”
Simone shares the most profound moment in her son’s journey with NF2. “The kids in class had made kites to send up to heaven with their wishes.” Most children wished for typical childhood pleasures like puppies and Lego sets. “Then I got to Ryan's kite. On his kite was a little box with a First Aid symbol and it said simply, my dream is to heal.” She still has the kite to this day.
“I cannot make this go away for Ryan and I know that both his father and I would take it on in a heartbeat to spare him. All we can do is hope that Ryan's journey with NF2 has as few hurdles as possible and that someday a cure is found.”