Shane Davis
Shane
Davis is ten years old and is in the fourth grade at Woodburn
Elementary School. He lives with his mom and dad, Sarah and Ed,
and 14 year old sister, Carrie. His grandfather, Pete Whetstone,
lives in an apartment attached to the house. Shane’s favorite
subject at school is science and he particularly likes conducting
experiments that involve gooey, messy substances. Shane enjoys
reading mysteries and also likes to camp. He is an avid camper
and has been going on camping trips with his grandfather since he was
four years old. Shane’s good friend is Nam Nguyen and they do
lots of things together. Shane also has Duchenne muscular dystrophy. This means that he has something missing from his muscles, something called dystrophin. Dystrophin is a protein and has important jobs in the muscle.
When Shane was about three years old, his parents noticed he was having more trouble getting around than most other three year old children. It took him a longer time to learn to walk and he was falling more often than most kids his age. He was also arching his back in a way that Carrie never had. Shane’s mother, Sarah, was concerned but Ed said, “Oh, there’s no problem. Look at those calves! He’s got huge muscles.” Shane did look like he had highly developed calf muscles, so his mother tried to stop worrying.
At Shane’s regular checkup at the doctor’s office, Sarah mentioned her concerns to Dr. Rosetti. Dr. Rosetti examined Shane’s calves and watched him walk. She agreed that Sarah’s concerns were not unfounded. Dr. Rosetti sent Shane for a blood test which indicated a high amount of a substance in the blood called creatine kinase (CK). Shane’s blood test showed that his CK level was much higher than the normal level. Dr. Rosetti consulted a specialist on muscle disorders and they decided to have other tests done. Shane was diagnosed as having Duchenne muscular dystrophy.
This past summer, Shane received his first wheelchair, a motorized wheelchair he refers to as “Wheels.” At this point, he uses it mostly to get from place to place, but when he is older he will probably use it almost all of the time. Shane is happy to have “Wheels” because as he’s gotten older, he’s had a more challenging time getting around. Before he got his wheelchair, by the time he walked to where he wanted to be, like to a softball game, he was too tired to play. Now, with his wheelchair, he can save his energy up for the things he wants to do instead of using up all his strength just getting there.
Shane is the featured character in The Kids on the Block program on muscular dystrophy.
