Condition: Neurofibromatosis and Scoliosis
City, State: OR
Club: Mountain View High School Sparrow Club Service Hours: 770
Date Adopted: 12/12/2008
Benjamin's Story:(1/29/09) When Ben was born he had some noticeable spots called caf� au lait spots. They are usually not associated with any medical problems, having many (three or more) such spots are linked with neurofibromatosis. Neurofibromatosis is a genetically-inherited disease in which nerve tissue grows tumors that may be harmless or may cause serious damage by compressing nerves and other tissues. In Ben's case he has tumors encompassing his abdominal area and also encompassing his entire spinal cord causing extensive spinal damage. He also had scoliosis. When Ben was 8 years old he had his first surgery (that lasted 6 hours) in Portland to remove the tumors from the lower portion of his spine. He wasn't growing and had a hard time gaining weight which is still an issue. He now needs to have 2 more surgeries. They are going to have to take care of the rest of the tumors on his spine before they can do the surgery to help correct the scoliosis. Ben suffers with headaches, lower back pain, being tired a lot, and he can't bend over. He can't do any contact sports, but does like snowboarding when he gets the chance. Ben likes his Playstation, watching movies, his music & Ipod, and sleep! ;) He enjoys hanging out with his friends, especially his cousin. He always has a great attitude even with all the challenges he faces. He's also a great help to his elderly grandfather and drives him to appointments, mows his lawn for him, and whatever else he can to lend a hand. Unfortunately Ben is uninsurable due to his condition, and they were hoping the surgery could be done at Shriner's, but it doesn't look like that is going to be possible. Sparrow cash raised for Ben will help with medical bills and everyday living expenses. His mom has to make frequent trips to Portland, and has to take time off of work to get him to his doctors.