A Personal Story of Daily Life for a Child with SMA

Ron and Debbie describe 8 year old Dylan’s daily routine, including going to school and playing sports.

Debbie: A typical day for Dylan, he wakes up at 7 o'clock every morning and he gets his medications and treatments, that takes about a half hour. And then nurse will usually wash him up, brush his teeth, which he doesn't like. [Laughs] Get him dressed and he's on the bus by 8:00 am sharp. He gets to school about 8:30, 8:40 and then he's in school until 3 o'clock. School consists of regular academics, all his regular subjects. He's on a regular curriculum, New York State based curriculum. And he also receives his therapies in school. So he gets physical therapy twice a week, occupational therapy three times a week, speech therapy two times a week and he gets oral motor therapy once a week. He gets special ed arts, special music, special Phys Ed. And at the school they also do wheelchair and orthotic clinics so we don’t have to take him back and forth to the doctor, they do it right there. So for example, this morning something broke on his joystick, Arthur his nurse brought him to school and they fixed it there. Ron: -- it's a special school for kids with physical disabilities. There are all kinds of kids there are at that school not just with SMA, but other neuromuscular diseases and other types of diseases. They play sports with the kids. They have a swimming pool if you can go into the swimming pool with people. They do all kinds of activities. They have been to the Statue of Liberty, the Bronx Zoo, you know as a normal field trip. Debbie: Yeah, they do a lot of fun things. Ron: So we're lucky that we had that close to us, not a lot of people are. Debbie: Yeah. So then back to his day, if it's a Thursday, he has wheelchair basketball, so then he goes to wheelchair basketball. If it's not a Thursday, he comes home and then I'll usually let him watch a little bit of TV and then homework. He has about a half hour to 45 minutes of homework per night and then we'll tend to let him relax a little, play video games. He likes to play the computer or the iPad. He's up in his room at 7 o'clock getting ready for his bath and his night treatment meds and asleep by 9:00. Ron: We try to get him asleep by 9:00 so… And on Saturdays, it's almost the same thing, but he goes to baseball and he's playing in the Miracle League Baseball league so.

Spinal muscular atrophy, SMA, RNA, mRNA, splicing, gene, genetic, DNA, antisense, motor neuron, splice, Type 2, Type II, nutrition, pneumonia, surgery, antibiotics, brace, physical therapy, occupational therapy, gastrointestinal, gastronomy, school, sports, nurse, computer, oral motor therapy, music, wheelchair, orthotics, swimming, basketball, homework, TV, games, baseball

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