Meet Allionna (Alli)!
Our story first began 8 years ago. On Feb 17, 2003, I gave birth to my second child who was my first-born son. His name was Ronald Duane Williams, Jr. but we called him RJ. He was a beautiful, healthy baby boy and was 7 lbs. 6oz. and 20 inches long. Perfect in every way! After a few weeks I noticed he wasn’t moving a lot. I kept telling doctors over and over again but no one would listen. They just kept telling me that all babies were different and he would do things at his own pace.
When he was one month old, he got a little cold and started having trouble breathing so we rushed him to St Francis ER. Our journey with SMA began here. He was admitted to Mary Bridge Children’s Hospital with pneumonia. The doctors there finally started listening to me. They knew instantly that something wasn’t right and started running tests. I’ll never forget the day we got his diagnosis. We were prepared for the fact that we might have a severely handicapped child but not for what was to come. They sat us down and told us they were sorry that our son had a disease called Spinal Muscular Atrophy (SMA), Type 1.
It’s a neuromuscular disease that affects the muscles. 1 in 40 people carry the gene that causes SMA. When you get 2 people together that both carry it, you have a 25% chance of having a child with SMA. It’s a progressive disease where the muscles slowly waste away. With Type 1, which is most severe, the child will never have the ability to walk, crawl, sit or even hold up their own head. The mind remains completely unaffected and SMA children are actually known to be unusually bright. The most devastating part is that it is the # 1 genetic killer of children under the age of 2. Ninety percent (90%) will not see their 2nd birthday.
My son made it to 4 months. We loved him so much and wanted to do all we could for him but the doctors had us convinced that taking him home with hospice was the only way to go. I have so many regrets and, if I could do it all again, I would do it differently. I just wish I knew all that I know now. On June 9th, 2003 we all went to sleep after an ordinary day. When we woke up, he was gone. I still look back and don’t have a clue how we got through it. The pain of losing a child is not something you ever recover from. It’s been 8 years now and it still hurts to think about.
After RJ we had 3 beautiful, healthy, SMA-free children. We were all done having kids and then SURPRISE! On January 11, 2011 we welcomed Allionna Yvonne Williams to the world (our Alli baby) and our lives were forever changed...
When I found out I was pregnant with Alli it was so late in the pregnancy that the doctor said the result of the amnio wouldn’t make a difference. Looking back now, SMA or not, I wouldn’t have terminated the pregnancy. She’s a blessing and I’m so glad she’s here! During my pregnancy I never felt her move and in my heart I just new she had SMA. I couldn’t even enjoy the pregnancy because I was so scared. I was induced on 1/11/11 because they were concerned about her lack of movement, and out came Alli baby! She was 6 lbs., 11 oz. and 17 inches, my tiniest baby.
They did a blood test in the hospital and told us it would be a few weeks until the results were in. We were terrified but hoped and prayed she’d be SMA-free. When she was 2 weeks old I took her to her pediatrician’s check up by myself having no clue the doctor had the test results. I kept asking if Alli seemed okay and if she thought she had SMA. The doctor said she had bad news and that the test came back positive for SMA. She said she was sorry but it would be just like RJ and she’d only have a few months. The rest is blurry because I freaked out so bad. I was crying and screaming for someone to please do something because I couldn’t do this again... a nurse came in and took Alli out until I calmed down. I called my mom to come to the office so I wasn’t alone. The car ride was awful, my mom and I kept crying and I told her I couldn’t tell Ron and the kids; I couldn’t be the one to crush their whole world. When I walked in the door, Ron saw my puffy eyes and knew something was wrong...
I told him and we all cried... I must’ve locked myself in the bathroom for about 5 hours crying. I couldn’t hold Alli or look at her; it hurt too badly. I wanted to stay in that bathroom forever and never come out. Then Ron came in and hugged me and said I needed to come out and hold her, she needed us and we had to be strong for her...so I came out and that’s what we did.
Days went by and we all walked around like zombies crying all the time. Then I decided I couldn’t just sit here and watch another child die, there had to be something we could do or someone that could help us. I spent days searching the internet for any kind of hope and I guess the rest is history. I found SMA Space and my SMA family (a community of people all over the country that were going through the same thing as me). Some of them had children as old as 13, when doctors told me she’d never live past 2! They gave me so much hope and understanding that I so desperately needed. They told me about protocols, and special equipment; things I never would’ve known if not for them. I owe so much to these people.
A few months ago Alli got a cold which led to respiratory failure. We almost lost her; it was terrifying. She ended up having to get a tracheostomy and we spent 3 1/2 months in the hospital, but we made it through. She’s at home now and I’m so excited to say is celebrating her first birthday on Jan 11th! She’s a strong, happy and beautiful baby girl. Everyone she meets falls in love with her. I’m so blessed to have her; she’s the best thing to ever happen to our family. I don’t know what the future holds but I pray every day that my beautiful daughter will have a long, happy life and we'll find a cure for this horrible disease so no more families have to feel the pain of losing their child. I know until then my sweet RJ and all the other SMA angels will be watching over our babies keeping them safe :). Alli's website is www.our–sma–angels.com/alliwilliams.
Story shared by: Nicole Juntunen-Williams (Alli’s mom)
From Special Gifts for Special Needs - December 2011