Parents of a 5-month old baby girl with Spinal Muscular Atrophy (SMA) have created a website to educate other parents and doctors about their child’s terminal condition.They also are using the site to celebrate future milestones that she won’t be alive to achieve.
“Imagine you’ve been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do? My name is Avery Lynn Canahuati, I’m almost 5 months old, and this has become my reality. But before I die, there’s a few things I’d like to accomplish…this is my bucket list and my story. SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!”
“Before I share my weekend, here are some facts about Spinal Muscular Atrophy (SMA):
1 in 40 people (that’s over 7,500,000 people) in the U.S. alone are carriers of SMA. I lost count somewhere between my big toe and my pinky toe, but doesn’t that seem like an awfully BIIIIIIG number for most people to have never even heard of the #1 genetic killer of infants and children under the age of 2? And if you think about it, that number could be significantly higher than 7.5 million. I mean, do you recall when your last SMA carrier test was? Or the last time an SMA carrier test was offered to you?”
“I know my mommy & daddy were never offered a test to see if they were SMA carriers. Did you know you can ask your doctors to test you and your partner for the SMA carrier gene prior to conceiving children? And did you know that if you both carry the SMA gene you can use alternative fertilization methods (ewwwwww yucky) to ensure your children will be born without SMA? Or if you prefer, you can still try and conceive a child naturally (again, ewwwwwww), in which case you’ll be susceptible to the following probabilities (proba what?)…” (See the blog for all the probabilities. I didn’t want to pull too much from the blog.)”
The blog is written as the little girl and it’s her telling about different things she is doing such as getting her first kiss, or first Valentine’s flowers or visiting a college campus. There’s a whole list of things to accomplish on the site.
Most readers assume it’s the mother writing as the little girl, but according to The Huffington Post, it’s the father.
As of last night the site had more than 2 million page views and was rapidly increasing.
I am just weeping as I am writing this. I can’t imagine being told your brand new little baby won’t be able to use her arms or legs and is going to die. It’s just so sad. These parents are braver than I am to try to live in the moment and positively and make memories with their sweet baby girl. And also help others know about SMA and maybe prevent another baby from suffering.
So what do you think of their website and blog entries? Do you like the idea of making memories with their sick baby? Have you ever heard of SMA before? Would this encourage you to do genetic testing for it before getting pregnant?