A baby will make love stronger, days shorter, nights longer, bank balance smaller, home happier, clothes dirty, the past forgotten, and the future worth living for.

LLL

Live Every moment, Laugh Everyday, Love Beyond Words

Thursday, April 12, 2012

Avery's Bucket List: - An amazing blog I found

Click here to see Avery's Journey

Avery has what is knows as SMA. Here's what Avery Blog tells us about it.

What is SMA:
SMA is currently an incurable disease caused be a genetic defect and it attacks the muscles which causes inefficiency of the major bodily organs - especially of the respiratory system - and eventually leads to death.  1 in 40 people are carriers of the SMA gene.  Meaning my mommy and daddy had a 1 in 1600 chance of both having it and even then there was only a 1 in 6400 chance I would get it. 

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 their quality of life is not very good and more often than not, the life expectancy is still less than ten years of age and even lasting past two years of life is not guaranteed.



Avery has a Bucket List, and she plans to fulfill each one! Help add more memorable activities and milestones to her list! So visit her blog:Avery Can and follow her journey.


I read this blog and I see a happy, loving baby. An amazing family making the very most of every second they have to spend with their daughter. I think it is an amazing story and I plan to follow this blog! I think it is important to research illnesses and the families who deal with them. It can teach you a lot about who you are as a person, who want to be & how you can help support others in just about anything!