Today is a special day because mommy said that I could write in her blog! I’ve never written anything before!
The reason I asked mom if I could write in her blog today was because I have a story I would like to share with you. I have a friend who was born just four days after me, Avery.
- Source: http://averycan.blogspot.com/
When Avery was four months old she found out that she had a boo-boo called Spinal Muscular Atrophy (mommy Google’d it for me…Wikipedia defines it as: “Spinal muscular atrophy (SMA) is an incurable autosomal recessive disease caused by a genetic defect in the SMN1 gene which codes SMN, a protein necessary for survival of motor neurons, and resulting in death of neuronal cells in the anterior horn of spinal cord and subsequent system-wide muscle wasting (atrophy).” )
This made me very sad that one of my friends had to experience such a hardship. Her family is doing as much as they can to raise awareness of SMA, because it is the number one genetic killer of babies and children under the age of two. Mommies and daddies can have genetic testing done to see if they are carriers of SMA, which for some is free! But you have to make sure you ask your doctor, because they do not typically offer the test. Avery and her family are also raising awareness for SMA so that they can reach their goal of 1,000,000 dollars towards a cure! How awesome is that?!
So, I wanted to help out my friend and share her story on mommy’s blog so that maybe a few more people can hear about Avery’s story, learn about SMA, and do something about it. I hopefully will be able to meet my friend one day, but in the meantime, I hope that she stays comfortable, gets lots of love from her mommy and daddy (that’s my favorite!), and remains in good health.
You can read more about Avery and her family here: Avery’s Bucket List
Isn’t she beautiful!!!