Hi, my name is Meg and I'm fundraising for one of my closest friends, Will (Follow BrokeNeckWill on Instagram), who was just diagnosed with a disease called OPLL; a disease that the doctors said should have killed him years ago. Yet here he is…still pushing forward against all odds. For those of you who would just like to know the summary of it all: Will was diagnosed with OPLL - a disease with no known cure and can only be managed through surgery, physical therapy, and medication He had to undergo immediate neurosurgery on his spinal cord and has a 6+ month recovery time while he relearns how to use basic motor skills and functionality of his hands and neck He needs help paying for hospital and neurosurgery bills, medical supplies, as well as occupational and physical therapy costs All surplus donations will be passed forward to The OPLL Foundation, a non-profit that he created to help build awareness about the disease, support those who have been diagnosed in finding medical care, and fund the research needed to discover a cure for OPLL For those who are interested in knowing the backstory and details: Can you imagine what it would be like to wake up one seemingly normal day, only to have a series of traumatic and unfortunate events upend your entire life? That’s what happened to my friend Will this summer when he was diagnosed with OPLL. Will woke up one sunny day in California, ready to take his dog, Panko, for a walk before heading into the lab where he works as a research scientist. All was as it normally is except for an unusual numbness in Will’s dominant hand, an odd delay in the movement of his pointer finger, and a walking limp that had formed overnight. At 33 years old, Will was a seemingly healthy man with no major medical history aside from a traumatic car accident that he suffered when he was a child; a car accident that saw his twelve-year-old self thrown into the windshield, knocked into a coma, rescued by the jaws of life, and placed in a nursing home and wheelchair for months of post-surgery recovery. Despite that car accident, the Will I befriended in grade school had gone on to make a physical recovery that enabled him to grow up playing rugby and hackysack, to dance and headbang at concerts, to go camping, hiking, skateboarding and traveling…it was like everything was back to normal until one day it wasn’t. The day Will woke up with numbness and a limp, he reached out to his company’s first aid clinic as the initial step in determining what was wrong. After escalating the situation from his company clinic to a chiropractor, Will decided to drive himself to the ER as his symptoms continued to progress. Within 24 hours, Will was diagnosed with a genetic disease called OPLL and underwent immediate neurosurgery on his spinal cord. For many of us who have never heard of OPLL, it stands for Ossification of the Posterior Longitudinal Ligament. In basic terms, that means that the ligament inside Will’s spinal column has been slowly turning into bone and growing over time to fill the gap in his spinal canal. As the bone continues to grow, it has been narrowing the space within Will’s spinal canal, pushing on his spinal cord - the explanation for the numbness and other symptoms. The doctor was so shocked by the accelerated progression of this disease because it typically doesn’t show any symptoms until the patient is in their late 60s-70s. At a mere 33 years old, Will’s spinal cord had been crushed to the size of a thin ribbon compared to that of a healthy spinal cord, which is typically the width of a pinky finger. The doctor, with both relief and disbelief, informed Will that (based on the state of his spinal cord) he is lucky to be alive right now…that a simple sneeze could have ended him years ago. Sadly, the procedure was merely a stopgap for a disease that will continue to progress over time, as there is no known cure for OPLL at present. The weeks following the surgery have been a blend of pain and emotion as Will struggles to keep his life together while in recovery. He was kicked out of the hospital just 4 days post-op and relocated to a nursing home where he was forced to be his own doctor, his own pain management, and his own advocate for care. Will’s landlord attempted to evict him from his apartment for missing a single rent payment while in the hospital, forcing him to move to another unit while in recovery. Will has been coordinating with insurance companies and the SSA regarding claims and disability, handling phone calls with reps and doctors for forms submissions and approvals, all while taking care of his own family members and diabetic father. Between the physical and mental trauma, Will has found hope and support by opening up to others about his experience. He created the @BrokeNeckWill Instagram account to be able to share his story and spread awareness about OPLL and his experience. To take it a step further, Will decided to start a non-profit called the OPLL Foundation to connect patients and caregivers with basic information about the disease. The OPLL Foundation’s purpose is to provide the world with updates regarding the latest medical developments, recommendations of experienced doctors and surgeons, and to help fund the research needed to find a cure. I’m creating this LFEBridge to support Will along his journey…to support all of those people impacted by OPLL. If Will can start the OPLL Foundation while laying in a hospital bed, imagine what can be done once he’s fully recovered. Please help Will in his time of need so that he can pay it forward to others suffering from OPLL. All donations will help pay for hospital and neurosurgery bills, medical supplies, as well as occupational and physical therapy costs. Any surplus donations will be passed along to the OPLL Foundation to support the non-profit in achieving its mission. Note: Will and I met in grade school and grew up together in Ohio. He now lives in California and I am fundraising on his behalf.
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