Simon Ibell

Simon Bell (thestar.com)

Imagine being told, you will only live to be 10 years old. These were the words told to Simon Ibell, diagnosed with Hunter Syndrome at 2 years of age. Born in Toronto, Canada, on December 6, 1977, Simon was diagnosed with a rare disease that affected his main organs and joints, it caused his body to stop breaking down mucopolysaccharidosis. Simon, now 35 years old is still struggling with hunter syndrome and is trying to find a cure!

Hunter syndrome is a disease that is commonly found in males and is diagnosed at a young age. Hunter syndrome interrupts the body's ability to break down mucopolysaccharidosis. Mucopolysaccharidosis is a virus that stops the building of bones, cartilage, tendons, corneas, skin, and connective tissue. It is extremely painful and most patients die before age 10. Patients are told by their physicians not to do any activities as it is painful to move. Simon and his mother did not read these suggestions and so Simon continued playing soccer. Simon was very active in his childhood especially dealing with such a big disability.

Simon went to University of Victoria and received a degree in Leisure Services Admin in 2002. Simon was getting a master's in arts in human kinetics with specialization in sports psychology and human potential, but was interrupted by a drug trial in North Carolina, Chapel Hill medical center. The drug trial was to prolong his life and stop progression of Hunter Syndrome. The Quebec government would not pay for the treatment of Elaprase (the drug) that would prolong life for people with Hunter Syndrome. The trial lasted two years, with many signatures and supporters, including NBA all-star Steve Nash, the Quebec government finally agreed to fund Elaprase.

Simon is still alive and has surprised doctors greatly. He has founded the iBellieve Foundation, that looks into a cure for Hunter Syndrome and other rare diseases. He was awarded the Queen's Jubilee commemorative medal from her majesty Queen Elizabeth the second and Kinsman award for courage. He biked up Vancouver Island for Bike 4 MPS Odyssey, which was a bike race fundraiser for hunter syndrome research. Simon is now working as an athlete relations and communications manager for Rights to Play Canada. He is still dealing with Hunter Syndrome, he speaks at conferences and does fundraising, his team is currently looking for a cure. This is why Simon Ibell is a hero to me.