Andrews Story

10th December 2014

Andrew was born on August 8th 1994 in Dunnville, Ontario. He was a very energetic active happy boy who enjoyed playing baseball, soccer, hockey and tae-kwondo. But his biggest love was riding his bike. We thought that one day he would race in the Tour de France. Andrews life began changing prior to starting grade 2 in 2001. He started showing behavioral changes. In a period of about 2 months he began to do strange things. He had started sucking on his t-shirt Chewed on his nails. He started standing on his head, sometimes to the point we thought he was going to injure his neck. He stopped playing with his buddies. Playing a lot by himself. His school work had became very difficult for him to grasp. We searched for answers into his changes. The original diagnosis in September of 2001 was ADHD. The second diagnosis of aspergers/autism came in November. Andrews condition continued to worsen. By this time he was crawling around in the house on his hands and knees. We finally had an appointment to get Andrew an MRI for the first week of Jan 2002 after seeing the third Pediatric specialist. Andrew came down with the flu on Dec 31st 2001 and through insistence was admitted to Emergency at McMaster Hospital that evening. The doctors were able to witness Andrew’s behavior. They observed his behavior for a day and from these observations scheduled an EEG in the morning of Jan 2nd. The results from the EEG showed irregularities and an MRI was scheduled for the afternoon. The devastating news came at 6 pm that evening “ Adrenoleukodystrophy”. The onset of the disease was very advanced. We kept Andrew home to care for and keep him comfortable through all the degenerative changes he went through. He became bedridden by April 2002 just after his G-tube had been inserted. His condition continued to degenerate. Andrew passed away on May 8th 2003. Our hearts and prayers are with all the families and the children that suffer from this terrible disease. If you would like to chat or have questions about ALD, you can contact us at