For most of us, throughout our life, we will face the odd challenge or two every now and again; but for others, the challenges don’t stop and even worse, get more pronounced over time.
For example, take Ryan, a 16 year old high school student with Neurofibromatosis (NF) Type 2. Tumors from NF2 took the sight in one eye at the age of four and then a very rapidly growing tumor robbed him of sight in his other eye, 18 months ago. Ryan is now, slowly – because of his NF2 – going deaf. Imagine the loneliness and pending isolation and the knowledge that yet another primary sense will be taken from you, leaving you almost totally disconnected in the world.
It is because of Ryan’s situation that Juraye Pierson, one of NF Northeast’s 2015 Boston Marathon team runners, is so willing to put herself out to help. “I am exhausted. I am working almost 60 hours a week as a SPED director and running in all free moments. My bills are not paid, my house is really messy, and I have no social life…
But, why am I doing this you ask? Because my heart aches when I think of the pain that Ryan is in on a regular basis and the loneliness that he must feel being so isolated as a blind student who is losing his hearing. It is the least that I can do for him and all of the others affected by NF2. My anger fuels me to keep trying and go further and gets me out of my own head and into my heart.”
Juraye, who is head of Educational Services at Ryan’s High School, works closely with Ryan. It is because of him, she is running the Boston Marathon this year.
High School is hard – it’s hard for teenagers who are sighted and can hear – and yet this brave young man is determined to attend school as often as possible while battling chemotherapy, learning braille, learning to use a cane, and even while learning to tactile sign. There are days when his struggle can be overwhelming to and he wants to give up, but he never does. His family fully supports him and so does his school community. Ryan is a vital part of the school community and inspires classmates and teachers alike. He loves to draw, enjoys riding a stationary bike and loves trains – reading about them and building model train sets. Ryan has an amazing imagination and uses it to write stories, one chapter at a time, about Castle BART where his teachers are cast in various roles as King, Knight, Goddess, Sorceress and Scholar.
Juraye is running to honor Ryan, to remind him that he is not alone and to help raise desperately needed funds and awareness for research, treatments and eventually a cure for NF. Juraye knows that when she faces Heartbreak Hill and others in Newton, that she is doing it for Ryan and that as challenging as those hills may be, they pale into insignificance to the challenges that Ryan faces every day.NF Northeast is honored to have someone like Juraye run the Boston Marathon and help Ryan and many others with NF Type2 face that battle.