Moms know things; they just do. I knew Brandon had 'something' right from birth, but there was just nothing to diagnosis. Brandon was one of those kids who just didn't get things as quick as other kids seemed to. It wasn't until he was five years old that we found out he had Neurofibromatosis. At last we finally had an explanation for the quirks and challenges we'd noticed throughout his early years. The hardest part was knowing that he had something that could change and get worse at any time.

NF manifests itself in so many different ways it is difficult to know where the condition might go; it is unpredictable, incurable and always changing. By the time puberty hit, Brandon was dealing with several complications. 50% of NF people have learning disabilities and Brandon was always struggling with the ability to communicate his intelligence. He had two small tumours in his brain that affected learning and social interaction. This was probably the thing that set him apart from his peers the most; by looking at him you'd never know he was dealing with such a complicated condition.

Brandon's other biggest challenge was the scoliosis of his spine. The curvature was significant and at the age of 12 it was recommended he wear a brace to try to hold his spine and prevent it from twisting further. In our last appointment a month before his death, he was told he could be facing surgery to insert rods along his spine if the brace didn't work. NF scoliosis is different than regular spinal scoliosis as the outcome of the treatment is unpredictable.

Brandon really hated that brace, and it was a constant struggle to make him wear it. It went from his armpits to his hipbones and wrapped around him completely. He was told that in order for it to be most effective, he was to wear it 23 hours a day and only take it off for showers and daily exercises. He would take it off the minute he could and left it off whenever he could get away with it. We burned that brace in a huge bonfire the night before his funeral, it was an unforgettable moment!

If you could only imagine what it would take for an adult to deal with this type of condition, think about what a 5 year old little boy must have been thinking. As he grew up, he'd wonder 'why me?' How do you tell a 5 year old about a condition he couldn't even pronounce? We as his parents did what we could to help him with his struggles but we were at a loss as to how to help him face the daily battle he was dealing with. We told him to be strong, that the teen years don't last forever, and that usually adults are much kinder than teenagers. How strong can one person be expected to be; it was just all too much for him.

• Introduction
• Dedication
• Medical Problems
• His Medical Team
• His Education
• His Teen Years
• His Death
• His Challenge To You
• Photo Gallery