About
Our SMA Angels
I
have received several e-mails asking me where Our SMA Angels came
from-who is involved and how it got started. So I thought I would
dedicate a page to tell you the origins of Our SMA Angels.
My
name is Laura Stants, and up to 1995 I had never even touched
a computer beyond Word Processing. Then in the fall of 1998, my four
month old son Devon was diagnosed with a terminal illness-Spinal
Muscular Atrophy Type I. The doctors had to look it up in a book. No-one
had ever heard of it or what I was supposed to do about it. So I hit the
greatest invention to date: the Internet! In my searches I found a lot
of medical information-but that's it. I only found one page of a family
in a similar situation as ours, but other than that, very little
personal information. The medical information helped me a great deal
understanding the disease, but it didn't help my spirit. We felt
completely alone out there with a disease that nobody had ever even
heard of. I found a guestbook to write in on, and that helped a great
deal.
Then
one day my husband said "Why don't you make a website for
Devon?" So I started the process of learning website design by
trial and error. The next step was "What do you think of starting a
place where anyone with a child with SMA can have a website?" I
thought that was a darned good idea! One place where people could go to
not just get medical information, but actually MEET other children,
other families-see pictures, read stories, get to know each other-all
the stuff I could not find on my initial search for help with SMA. So I
went to the guestbook I was "chatting" on, and asked that if
anyone was interested in a website for their child, to let me know. I
ended up with 6 other people who were interested. I told them they'd
have to design their own sites because I didn't really know how. We
voted on and came up with a name: our-sma-angels.com, and thus the site
was born.
It
has only been a short time since the inception of Our SMA Angels, yet so
much has changed. My son Devon has been gone for awhile now, and his
little brother Sidney joined him only two months after he died. Our SMA
Angels has gone from the original 4 or 5 sites that initially ended up
starting to now having over 125! As time passed I got a bit better at
putting sites together and creating my own graphics and that has helped
tremendously in allowing people who don't know how to do websites to be
able to have one of their own anyway.
There
is no charge to any parent of a child with SMA to have a site. A parent
can either design the site themselves or I will be happy to do it for
them.
All
sites are graciously hosted by Cscape.
As
time passes, I am sure we will continue to grow and provide more
websites for more children and parents involved in SMA. Our greatest
hope is that a short time from now these sites will be both
memorials to these young heroes who have already lost their fight to
SMA, as well as celebrations of miracles when our children are cured
from this disease once and for all.
Join
us in the fight!
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