Dear Curesnow:

Thanks for responding. I appreciate your efforts to answer my
questions honestly. I'm still not clear about your motives though...
That it just infuriated you and you needed to do something about it.
Why did it infuriate you? Are you a high school or college student?
Do you own any stock in stem cell companies? Are you or a loved one
affected in some way? I'm trying to understand where you are coming
from...

Let me explain my motives and why you may (or may not) have
difficulty getting support from this group:

I can't speak for everyone here... I want everyone to understand I'm
only speaking as an individual now and not as the president of SBANC
(even though some of you are not in NC or even the US and my
involvement in SBA of NC and commitment to the group wouldn't really
matter to you anyway). However, if many others feel the way I do then
you might have a hard time convincing us to join your efforts.

Would you take the time to hear me out as I have you?

For me this is a huge ethical dilemma much like we faced when we were
expecting my daughter -- our first child. I am the father of an 8
year old girl born with SB... She's had 12 surgeries and uses a wheel
chair because it affects her at the T-12 vertabrae. But she has a
pretty happy life. She loves going to school and has lots of friends.
She enjoys playing with her little brother and cousins... She just
got a (borrowed) handcycle and is having fun riding with us on bikes
now in the neighborhood. She plays wheelchair basketball and tennis.
She's a very active child. Don't get me wrong; there are some hard
times. There's anger when people don't seem to care or are just plain
ignorant. There will be more as she grows up. But we wouldn't change
it for anything!

I'm not sure you understand that SB is something that you can find
out about ahead of time in a pregnancy. We knew our daughter would
have it when we were only 5 months along in our pregnancy. The doctor
strongly suggested we get an abortion and try again.

But we couldn't. He painted a very bleak picture. But it was against
what we know is right because of our faith in God and Jesus Christ.
Faith is believing in something even when things look bad. It was a
huge test of our faith. We couldn't do it because our hearts wouldn't
let us. God spoke to our hearts and calmed us when everything seemed
so crazy. He has been with us the entire time and helped us through
many situations both related to her health and other things we face
in life. God has blessed us with both our children. Our daughter is a
blessing and we would never change what we decided -- even because of
the hard times and the financial burden. God will provide and honors
our obedience to His word -- "Do not murder."
http://bible.gospelcom.net/cgi-bin/bible?
passage=EXOD+20&language=english&version=NIV&showfn=on&showxref=on

I don't have all the answers. I'm just a Dad with a daughter I love
very much, a family I love very much and a God I love very much.

But perhaps you can understand my ethical dilemma now -- which others
may share in this group or not. Many people just choose to abort when
they learn their child will have a disability because it seems
easiest for everyone. I believe the statistic is over 70 percent are
aborted. You can say you are justified because you don't want to put
a child through the hardships of life with a disability. But my
daughter is glad to be alive! I believe everyone on this board is
glad to have a chance to live life, even though it is hard at times.
Even when it hurts sometimes. Maybe some of you had a similar
experience, or your parents did. My daughter is here because we
believed God and not the doctor. Even though He has not healed her,
we know He has a special purpose for her life. We see how she touches
people with her love and sincerity. With her determination when it
would be so much easier just to give up. That she can do all things
through Christ, who strengthens her. She inspires me.

I have met many of the people in this group personally. And I believe
God has a special purpose for your lives too -- whether you know it
yet or not. You inspire me too. I pray for you.

You may just think of me and my family as the same Fundamentalist
Christians that are against growing babies to kill them for stem
cells. Would you dare to walk in our shoes?

Yes, we would like to see our daughter healed. But no, we wouldn't
want to do it through a means that contradicts why she is here in the
first place: Because of our belief in the sanctity of life. That
every life counts -- even if it faces a disability. And that life
begins at conception. And we are teaching her our beliefs. And when
she is an adult, she will make the decision for herself.

Well, now we've opened up a narrow door. What if the stem cells
worked and you could walk when you never could before? Would you
still walk through that narrow door?

We will all still die someday too soon unless Jesus Christ comes back
before then (because the Bible says we'll be given our glorified
bodies to serve Him when He does return). But if we die before that,
our spirit is taken up to Heaven to be with our God and to worship
Him. He gave us the right to choose for ourselves to love Him. And if
we love Him, we show it by obeying His Word. He doesn't want puppets,
but true love from the heart. He sent His only Son, Jesus Christ, to
die on the cross for our sins so we could have eternal life and be
reunited in our relationship with God as we were meant to be.
http://bible.gospelcom.net/cgi-bin/bible?
language=english&version=NIV&passage=john+3%3A16-21&version=

We all have our crosses to carry. Sometimes you just have to hold on
to what you believe. If holding onto my beliefs makes me a
fundamentalist, then I guess I am. I pray God will bless you with
open eyes and a tender heart for those who face hardships with
disabilities. I don't have all the answers, but He does. Lean on Him
for support in the bad times and good.

Sincerely,

Mike


--- In sbaofnc@y..., "curesnow" <no1899@e...> wrote:
> Hi! I wanted to reply right away to clear up a couple of points:
> 1. I am not spamming! Ok, so I don't really know the definitions
> of spamming, but I think it means dropping lots of information
> indescriminantly everywhere and not following up. That's not
> me.
> 2. No, I do not know anyone personally with SB. That does not
> mean I don't care.
> 3. I am not from North Carolina. But as we go along, you'll see
> why I have contacted you.
> 4. I am not a lobbyist, nor do I work for a biotech company. I am
> an advocate, i guess, for those who will be afffected by this
> Brownback Bill, which just so infuriated me I had to do
> something. That's why I am trying to get the word out to the 12
> states whose Senators are strongly considering backing this bill.
> My Senator is against it. It wasn't enough for me to just be glad
> about that!
>
> Now, most importantly- how does this research pertain to SB? I
> will get you some answers and some links as fast as I can. I
> have piles of them to sort through, but I wanted to write
> immediately first.
> Some basic sites? www.nih.org, or there are great articles on
> www.nejm.com (do a search on thier site)