TLC recently featured an hour-long show on Joanne Fluke, who has caudal regression syndrome and participates in ballroom dancing. Here are some links.
A blogger at FWD (Females with Disabilities) responds to the TLC program and to other media coverage of Joanne.
One of the sensationalist-type stories like the ones FWD responds to above: story in the UK's Mirror
To see Joanne dancing firsthand, see this Groovability video.
2 comments:
Danielle,
I came upon your blog after a night of googling for anybody else out there who had experience with CRS/SA.
My daughter Namine was born with it, along with a serious heart defect and other problems besides. She was predicted to die not long after birth, and if she survived, she would be mentally retarded and incapable of any semblance of a normal life.
She is two years old now, and has gone through nine surgeries. She is smart as a whip, and healthier than any of her doctors could have dreamed. She just got the casts off her feet from her clubfoot repair surgery, and will soon begin orthotics therapy to see if she will be able to walk. (They waited so long to address her feet because she is, first and foremost, a cardiac patient.)
Sincerely,
Paul Eiche
http://eichefam.net
Great to hear from you. I'd suggest joining the yahoo group for parents and people with CRS. You can find the link on the right of my page under Message Boards. It's great talking to people who know just what you are going through and have had some of the same experiences.
I'm glad Namine is doing so well! It's not so dire as the doctors often predict!!
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