August 1st, marks the start of SMA Awareness Month. There is going to be a change up on the blog. For the next month I'm going to feature other little boys and girls and their stories. While Audry has a story she is not the only one battling Spinal Muscular Atrophy. Some stories are in honor of, and others in memory of. I hope you enjoy the next 30 days and the beautiful people your going to meet. As always we ask that you continue to share our blog and get the information out there. 30 days, 30 faces, and 30 more reasons to donate. At the end of each blog there will be a link to donate to a cure. If your touched by a story donate in their name. We are all fighting for the same thing.... A CURE.
Without further a do, today is a 2 for one special. They are brother and sister Ali and RJ. Here is their story.
In Memory of RJ Williams
Ronald Williams Jr., our RJ, was born February 17, 2003 and died at home in his sleep on June 9, 2003. Before he was born Ron, his dad, was SO excited to finally get his boy! Ron's birthday is February 19th so RJ was ALMOST born on his b day! I got induced because I couldn't wait any more! 7 lbs 6 ozs and 19 inches! TONS of brown hair :) He was such a happy, smiley baby with such big brown eyes! He loved pooh bear and so many people loved him. At 2 months of age he was rushed to St. Francis Emergency Room with pneumonia...he was transferred to Mary Bridge Children's Hospital where he was in Pediatric Intensive Care Unit (PICU) for a month...they ran many tests and was finally diagnosed with Spinal Muscular Atrophy (SMA)...we were heart broken. I wish we were
given the info we have now and I wish I had internet than so I could have has all the support from the SMA community that I have with Alli... because of lack of knowledge we were steered so wrong...he only had morphine and oxygen...at his funeral we played "In the Arms of the Angels" by Sarah McLaughlin. At his funeral, his big sister, Kayla read a story she wrote about him. He is buried in federal way WA in Gethsemene Catholic cemetery in the baby section...
In Honor of Ali Williams
In Honor of Alli Williams
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..
"Embrace The Suck"
Ronald Williams Jr., our RJ, was born February 17, 2003 and died at home in his sleep on June 9, 2003. Before he was born Ron, his dad, was SO excited to finally get his boy! Ron's birthday is February 19th so RJ was ALMOST born on his b day! I got induced because I couldn't wait any more! 7 lbs 6 ozs and 19 inches! TONS of brown hair :) He was such a happy, smiley baby with such big brown eyes! He loved pooh bear and so many people loved him. At 2 months of age he was rushed to St. Francis Emergency Room with pneumonia...he was transferred to Mary Bridge Children's Hospital where he was in Pediatric Intensive Care Unit (PICU) for a month...they ran many tests and was finally diagnosed with Spinal Muscular Atrophy (SMA)...we were heart broken. I wish we were
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