Ben's Medical fund

Growing up, Ben was a talented athlete excelling in every sport he played, and was hopeful of a promising hockey career when he was scouted by the Canadian Junior League at the age of 15. Ben’s time on the ice was cut short in high school when he was diagnosed with Scheuermann’s disease of the spine. The pain brought on by the curving of Ben’s spine and the risk of injury while playing contact sports ended his hockey dreams. Ben went on to create a successful career in the world of finance and was doing great. He lived with the pain in his spine and didn’t let it get him down.

In his mid-twenties Ben’s fate took a turn for the worse. His pain increased, but not just in his back. His head was hurting, his vision was failing, and he knew something was wrong. He underwent many tests and the doctors told him they found a mass in his brain. He was 27. He met with multiple neurologists, and in the end the mass was deemed inoperable. While the doctor’s debated on how to treat the brain mass, Ben continued to have pain all over his body. Ben underwent CAT scans, MRI’s and X-rays. It turned out the mass was not just in his brain, but in his lymph nodes, leading the doctors to believe he had lymphoma. Biopsies were taken from Ben’s lungs and the test for lymphoma came back negative. It was at this time the doctors tested for sarcoidosis. The tests came back positive. No one in our family had ever heard of this and so the googling began. We rejoiced at the fact that this disease is often able to improve with the use of steroids and we saw a light at the end of Ben’s medical tunnel. That light quickly faded.

The standard treatment for sarcoidosis is the use of steroids, and Ben was started on prednisone immediately. The dosage was gradually increased and eventually the mass in Ben’s brain started to shrink. This was a cause for celebration and we all were so glad treatment was working. As the masses throughout Ben’s body were going away his prednisone dosages were lowered. Unfortunately, when Ben was weaned from his medicine, the masses grew back and his body started attacking itself more rapidly. Already having a spine disease, the sarcoidosis only increased the development of Scheuermann kyphosis, leading to more pain. Ben’s body grew weak and movement was torture. Come 2014 the pain was so unbearable Ben could no longer carry out daily functions, including working. He was cleared for long term disability at the doctor’s request so they could focus on finding a treatment for Ben.

While looking into Ben’s pain, more tests showed his hips were disintegrating due to the high dosage of prednisone he had been on for so long. The doctors scheduled a total hip replacement for him, knowing he would need both hips replaced eventually and perhaps spinal surgery to correct the damage sarcoidosis and Scheuermann’s was doing to his back.

Now faced with the fact treatment was helping Ben’s masses, but deteriorating his bones, the doctors started to scratch their heads. The same thing that was helping Ben was also hurting him. Ben was sent from office to office seeing doctors specializing in rheumatology, pulmonary, neurology, neurosurgery, ophthalmology, endocrinology, orthopedic surgery, dermatology, and oncology at both Fairview clinics and the Mayo Clinic, and is currently being seen at the University of Minnesota.

Without being able to be on high dosages of prednisone, the sarcoidosis has come back with a vengeance. The doctors have found granulomas (the inflammatory cells that group together and interfere with the organs function) in his liver, lung, lymph nodes, spine, brain and his bones. A second hip replacement is scheduled for November 12th, 2015 in hopes that after surgery Ben will be able to start a trial with the drug Remicade. Beyond that, Ben’s current doctors have suggested he travel to the Cleveland Clinic and see doctors who specialize in sarcoidosis and may have other treatment options.
 

With your help, we are hoping to raise money in support of Ben so that the financial burden of this terrible disease is lessened and to get him to doctors who might be able to give him relief.  In doing so, we are optimistic for a future where Ben can get back to living a normal lifestyle, pain free.

With gratitude and thanks,
Adam, Russell, Mia, Madeline and Richard