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Smith-Lemli-Opitz Syndrome
(SLOS)
Tonight,
November 2, 2005, the Senate of Pennsylvania unanimously passed
a resolution that named the month of November as Smith-Lemli-Opitz
Awareness month. The resolution was sponsored by State Senator
John Rafferty (
R-Bucks
County
). He has been a true
gentleman with regards to my family and to my daughter.
I asked him several weeks ago if he would sponsor such a
resolution and he was more than happy to do so. Resolutions
like this are passed every single day we are in session. This
time it was something that I really cared about and was
deeply honored when he
asked me to come on the floor while he was speaking on it.
Several senators and co-workers came up to me afterwards.
Some had tears in their eyes, because not only was the
tribute that poignant, but they
know me and know Angela.
As soon as I am able I will post a copy of the resolution as
well as the remarks that Senator Rafferty made on our
behalf. I did this for each and every one of us out
there who live with our children
and know what this syndrome is like. It isn't glitzy or
have big time awareness like many other syndromes, but it
is still important. If in getting this passed I can help make
just one more person aware of us and wonderful children it
was worth it.
So here's to us, the parents and family members of our SLO
children. If anyone wishes, I can provide an address to
Senator Rafferty's office.
Out here.
Andy DiNunzio
(Angela 2 yrs)
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