Caileigh DeWitt-Episode 4
Posted in Uncategorized by trisomyvoices on October 11th, 2007 
This week we hear from Jackie Risner, mother of angel Caileigh with Trisomy 13.
Caileigh’s page on Living with Trisomy 13
Other links in this episode:
Trisomy 18 Foundation Ornaments of Hope Campaign
Music by David Gielan
“Darkness (Leave the Light On)”
Responding to your question about how we explain Charlottes condition to strangers. Charlotte, like Mieko is very small and on oxygen all the time. She has partial trisomy 16 and partial monosomy 9, is 2 years old and 18 lbs. She cannot sit up or crawl yet. Children are always very interested in her and I encourage them to visit with her and say hi and appreciate parents who encourage thier children to visit with her. I think it’s important to help other children become more comfortable with people with disabilities. With adults I usually expalin that she has a chromosomal abnormality kind of like Down syndrome, and from the response I get I can tailor my further explanation. Sometimes the person knows very little about genetics and I can leave it at that, and sometimes the person knows other trisomy families or is familar with chromosomes and we can talk more. I’ve met lots of amazing people this way. I don’t mind at all when people ask questions about her and would much rather they ask than stare, steer their kids away from us or pretend we aren’t there. The one funny experience I have had was when a waitress asked “whats wrong with her?” and because Charlotte wasn’t crying or whining I answered “Nothing. She’s fine.” Then I relized the waitress was refering to her oxygen, etc. My lunch partner was offended for me but as I’ve mentioned, I’d rather people ask questions, even rather insenstive ones, than igmore us.