When I first found out Tine was pregnant
I was so excited for us, it seemed to good to be true. We were both happy
as could be, expecting our first, geez they were some good times. Tine
was pretty as a picture, just enjoying the new life growing within her,
it was just a beautiful time I’ll always cherish. Well, neither
Tine or me had any experience with children but we figured teach the child
right from wrong, nourish the baby with love and the rest would be easy.
(piece of cake). On Sept. 23, 2001 Tine says:" I think I’m
in labor", so off we went to the hospital. I didn’t really
think she was in labor, she didn’t seem to be in any pain at least
not till we were walking into the hospital, and she dropped down to one
knee in pain, then I knew: it’s show time. Well, thank god
for epidurals Tine was out of pain and it wasn’t long before Gilly
made her entrance into the world, kicking and screaming. Man, what a beautiful
site, our healthy baby girl. After the apgar test they told us Gilly scored
9.9 and that she was a healthy baby, we were overjoyed.
Well life was great, my marriage couldn’t
be better. My family couldn’t have been happier for Tine & me,
they couldn’t get enough of our little Gilly. But every now and
then life throws us a SUCK PILL, SMA was ours. The day the neurologist
in UMASS hospital told she was almost certain Gilly had SMA 1 our worst
fear had surfaced. Testing our beliefs & strengths and love of our
Gilly. Well we figured Gilly needed the best medical attention available,
so we brought her to BOSTON CHILDREN'S HOSPITAL being the best in our
area. They ran the test on Gilly and after a day or two called us into
their conference room. Tine and me with all the specialists, surely we
thought they would have some way of helping Gilly? WRONG they said they
were 99% sure Gilly had SMA 1.They told us she had 2 weeks to 2 months
to live, there was no cure, and nothing they could do. Just take her home
and enjoy the time you have with her, SORRY!
Talk about having your world turn
upside down, that was us, but not for long. First we talked and decided
we would do whatever it took for Gilly, although we weren’t sure
what that was. Well our prayers were answered when we found SMA SUPPORT
on the internet. For the 1st time since the diagnosis we had HOPE, luckily
Kim McAdams educated my wife about Dr. Bach’s protocol & NIV.
Kim had the same insurance as us, so she had paved the way for us for
the equipment and trips to N.J. for the g-tube & nissen. KIM we thank
you for making that rough road that laid ahead of us a lot easier to travel.
Well Gilly will be 1 1/2 years old
the 23rd of march, a lot has happened. Gilly spent a month in the PICU
in N.J. with a collapsed lung, from a failed extubation at UMASS Worcester.
This SMA will teach a person about faith, by testing one’s faith
daily, some times it almost seems like to much for one to handle. But
other times you are rewarded and your child pulls through against all
odds, just amazing.
Well after gilly’s 1st birthday
Tine talked to me about changing her diet. I thought the tolerex was a
god sent I couldn’t imagine trying something new, since the tolerex
worked just fine. We had much heated discussions over the subject (I thought
she was crazy). Tine can be pretty pervasive plus I know of her love for
Gilly so we started the raw food diet. It took me awhile before I believed
in it, but seeing is believing. So these days I thank GOD for my beautiful
daughter Gilly, my daughters mother Tine & all the families
with SMA that helped us.