What is SMA:
Effects of SMA and My Life Expectancy:
I have already lost the ability to move my legs and eventually I will lose the ability to move my arms and my head. When that happens it will be difficult and eventually impossible for my body to pump air through my lungs which is why most babies, like me, who are diagnosed with SMA type 1 have a life expectancy of less than two years of age with some dying in as little as a few months or even weeks of birth. In some cases children like me can survive with the dependency of a respirator, but more often than not, our life expectancy is still less than ten years of age and even lasting past two years of life is not guaranteed.
Some good news:
While SMA attacks my muscles and is completely physically debilitating, it does not attack my mind or my cognitive skills. Therefore I'm aware of my surroundings and I communicate very well with my eyes, facial expressions, and smiles. I love when people make funny noises at me, play with my legs, sing me songs, and look at me and smile.
Why I'm Sharing My Story:
My mommy & daddy were offered genetic testing, but within those tests, the SMA test was not included. So the first they'd ever heard of SMA was when I was 4 months old and my neurologist told them I might have it. Mommy & daddy asked all of their friends, family, co-workers, and anyone else if they'd ever heard of it. Not a single person answered yes and this included some doctors & nurses. Through my life, I want to make sure other children and their families don't have to go through what I'm going through and what my mommy, daddy, and everyone I love are going through with me. The only way to do this is to make people aware of SMA so they know they have the OPTION of getting tested for it. That's all I want and that's all my mommy & daddy want for me and all of my future friends.
The bottom line:
I have SMA Type 1 and there currently is no cure. The reality is that this disease will take my life at some point and there is currently nothing that can be done to stop it. So at this point, my family & friends can either sit back and watch me die and let my life be about doctors visits and tear filled days or everyone can embrace what my future holds and we can make each day I'm here a memorable one...starting now. My mommy, daddy, and grandparents have chosen to help me fight this disease, while embracing this news and helping me chronicle my "bucket list" experiences through this blog. If you have any ideas for, or would like to be a part of "Avery's Bucket List", feel free to tell me or my mommy & daddy!
How to React:
This news is terrible for everyone and a lot of times people try to be strong for people in situations like this, but me along with my my mommy & daddy will all tell you that we don't expect anything from anyone. If you want to cry with us, cry with us. If you want to make us smile, make us smile. If you want to pray, pray. If you don't know what to say, say nothing at all. If you're sorry, tell us you're sorry. If you love us, tell us. The truth is in a situation like this there is no right or wrong reaction and there are no profound words to be spoken and we understand that. We are here for you every bit as much as you are here for us and in a weird way it's soothing for us to know that. Just remember when you're in front of me, seeing you smile makes me smile.
Me, my mommy, daddy, Nana, G-Pa and all our family & friends are heartbroken, angry, sad, and afraid of what my future holds, but we are all fighters who are strong and loved by many, and probably most importantly we are all in this thing together. My mommy & daddy and my Nana & G-Pa have all managed to surround themselves with amazing friends & family who have supported them through many tragedies in their young lives. My Grandpa George died when my daddy was 13, then my Nana Carolyn died when my daddy was 20, and my mommy, Nana Sandi, and G-Pa lost my Uncle Bryant when he was only 22. It is the love my parents & grandparents share for me and for one another, along with the love of all their & my friends & family that will eventually help all of us get through this tragedy as well.
I was born smiling and here's some pictures from Easter as a reminder that I'm still smiling today...SMA please don't take my smile away.
|Avery: "Hey daddy, why no bunny business?"|
Daddy: "Oh, I'm sorry Aviator, would yoooou prefer I join yoooou in smiling like Bill Cosby?"
Mommy: (gritting her teeth) "both of you stop talking and smile."
|Me & My Peeps|
|Hanging With My Grands|
1. Celebrate Easter
2. Wear pink fuzzy bunny ears.
3. Try to keep my eyes open while staring directly at the sun.
4. Make my mommy, daddy, Nana, and G-Pa all smile.
5. Pretend to be too good for the camera while looking the other way.
6. Make my best Bill Cosby smile (you should try it...just say "you put the pudding in the pop" then smile!