Condition: Hurlers Syndrome
City, State: OR
Club: Ensworth Elementary School Sparrow Club Service Hours: 436
Date Adopted: 4/23/2008
Benjamin's Story:(10/14/08) Ben was diagnosed on March 26, 2008 with a rare genetic disorder called Hurlers Syndrome. This disorder affects one in 100,000 people. Because of this condition Ben's body does not produce a certain enzyme that breaks up long chains of sugar molecules. These molecules build up in the tissues of his body and cause damage to his heart, brain, and kidneys if not treated. Story: In May 2008 Ben had his first surgery to insert a tube so medications could be given to him. Then on August 14, 2008 he had a stem cell transplant and spent 37 days at Doernbecher's Hospital in Portland. Since then he has had some complications and had to go back in the hospital in Portland on October 4th. It looks like he may have to stay there through December. They are just not sure. His body is fighting the new cells and they are trying different medications to try and get things stabilized. Sparrow cash raised for Ben will help with the medical expenses not covered by insurance and the family's everyday living expenses. It will also help with travel and lodging while at OHSU on Portland. It has been tough on the family because they went from a two income household down to one, so Nichole can help care for Ben.