[tri-med] Re: strange question!

----- Original Message -----
From: "Shannon Poole"
> And still no input on the hypertrophic cardiomiopathy? Did that email
> reach you all?

It did - and I was hoping that April would pick it up. Marissa has
hypertrophic cardiomyopathy (pretty sure that it was - definitely one of the
cardiac myopathy's) and April was told that she would be dead by age two as
a result. The only "solution" that they gave was a heart transplant but
because of the trisomy (partial T-3) they wouldn't even consider it.
Marissa is now 3 and the myopathy has definitely gotten a lot
better............ I think it may even now be totally resolved.
April is at school now so may be a bit slow to see your email. If she
doesn't yell soon I will send you April's address off list.................

"Write injuries in sand, kindnesses in marble."
- French Proverb -


Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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