[Fwd: Re: Meri- titanium rib]

[Guest guest]

sending again.....

----------------------- Meri- titanium rib

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> Hi Meri,

> Thanks for posting the pictures of your son. I have an old textbook

about congenital spinal conditions that has a picture of a child with

SMA. There was a mom who posted on veptr.com (the acronym for the

titanium rib) whose son has SMA, but I have not really been on the site

too much since we decided not to do the veptr for our daughter right

now. There are other kids with the g tube or mickey button (I don't

really know the difference) on the site also.

> I think this mom was in a support group for the SMA. Are you able to

find other parents whose children also have it? I think she even went to

a conference about it at one time. Are some doctors more experienced

with the SMA diagnosis? I would imagine so.

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