We were all done having babies
and then surprise!! I knew that there was a chance she (our baby)
could have SMA but the doctor said it was too late for the
amniocentesis. The results of the amnio would not have matter
though, she's a blessing to our entire family. I spent my whole pregnancy terrified
and praying that she wouldn't have SMA...but I rarely felt her move.
I knew in my heart before the doctors even told me...towards the end
of my pregnancy I went in for a check up and they decided to induce
me do to lack of fetal movement. So Ron and my mom rushed down to
Swedish hospital and before we knew it (fast labor) out came
Allionna Yvonne (Yvonne is after my step mom) Williams...most
perfect baby ever!! Born weighing 6lbs 11 oz and 19 inches long on
January 11, 2011 (1-11-11). She looked just like my
other kids! Big brown eyes...I see her brother, RJ in her a lot. She
was tested for sma at birth and we took her home and waited for the
results...I was terrified the whole time. I'd pray to God to let me
keep her. I knew, I just knew. Her brothers and sisters were in awe
of her...they still are. They love her SO much. Laveah nicknamed her
Alli baby...it kind of stuck! When she was 2 weeks old I took her to
what I thought was a standard check up and got the news that would
change everything...she had SMA. Needless to say I freaked out. I
was crying so hard my mom had to come get me... the doctor said it
would happen just like RJ and we would only have a couple months.
Not again, I kept thinking...I can't do this again. On the drive
home I kept telling my mom I couldn't tell Ron and the kids...I
wanted them to have one more day just to be happy. But Ron knew
something was wrong the minute I walked in. We both sat in the
bathroom crying, everyone was bawling. Ron kept saying we had to be
strong for her and I needed to come out and hold her....the next few
days were a blur of sadness.
I had no hope, the doctors never gave me any. Then I started looking online and I found SMA Space and started talking to other families. They gave and continue to give me so much hope. I don't know what I'd do without my sma family. I draw so much hope and strength from them. I don't know what the future holds but we are going to fight like hell. I won't give up until there is a cure. My Alli is a fighter and believer. In my heart she'll be here for a long time. But we need a cure now.
When Alli was 3 weeks old we flew to Utah to see Dr. Swaboda. Her and her team were great. We learned so much. In April Alli had g-tube and nissen surgery done at Seattle Children's Hospital. We follow the NIV protocol. She is on VPA, in hopes that it might help.
I love you so much Alli baby, you are the best thing to happen to our family and I believe RJ's in heaven watching over her. We WILL beat SMA...we have to. I will do my best to learn as much as I can and be positive...but I sure hate SMA. Thank you again to the SMA community. I'd probably still be locked in a room crying if not for you. Jeanna Huette was the first one I spoke to she helped me so much along with the Gaynor family and Annette Reed...thank you!
Alli has a huge amazing smile, everyone that meets her loves her right away. It's sad how little people know of SMA, we want to spread awareness to as many people as possible.
Please be Patient While