Birthday: February 2, 1994 (or "Groundhog Day" as he would tell you)
Hair: Brown
Eyes: Blue
Current age/grade: 9, 3rd grade Stone Creek School
Danny has someone surpassed Tim for the infamy of being the most involved child of the family. Because of the rate of his muscle decline, just from using them to walk, talk and breathe, he was forced to start using a power wheelchair two years ago. We were told he could walk around his classroom and home. Things have just snowballed for Danny. He needs BiPap to breathe for him at night not because he is overweight (the only one of the kids to not be UNDERweight) but because of central sleep apnea, where his brain "forgets" to breathe during the sleep. It happens so often that we have to keep a battery backup with us in case he falls asleep in the car or the power goes out. He can't run at all any more, and frequently falls while walking. He has a systolic murmur and some subtle P-R changes with his heart. His oral muscles are weak. He has dysarthria and a Phononological Disorder. He needs help to bathe, wipe after a bowel movement, cut his food, and to brush his teeth. He has focal cortical dysplasia in the left frontal lobe of his brain. That's all the BAD news. If you want to know about Daniel, don't stop at this paragraph.
Because the GOOD news is that Daniel has a wicked sense of humor. He loves to read. He plays on a power wheelchair soccer team, and he plays to win. He adores his little sister, Claire, and has immense patience with teaching her to play games or play pretend or just being with her when she needs a friend. He works harder than anyone else in his classroom, and his teachers notice that, even if it doesn't put him at the top of the honor roll. He cares about everyone, and tries to make everybody happy. He makes the best birthday cards in the world. At night, after all the meds have been taken, he still lets me read to him even though he can read it all himself, just so we can have that time alone together. And after I help him put his breathing mask on and kiss his cheek and turn out the light and say "good night, Danny, I love you" he never fails to smile and relax and make me feel like I've done something good and right.
Page update: May 5, 2007
