Baby Avery

http://averycan.blogspot.com/

For the past couple of weeks, I have been preoccupied with this sweet little baby’s blog and her parent’s bucket list for her. Avery was diagnosed with SMA Type 1 and they are a fellow Houston family. Unfortunately Avery passed away at 5 ½ months and only a short 3 weeks after her diagnosis. But in her short life she was able to share her story with millions of people and has created a wave of unprecedented awareness for SMA.

Her dad, Mike, and I had just exchanged messages and wanted to let the girls meet up soon. I’m sad that we could not meet Avery and I’m sad that her life was taken so soon, sooner than even the doctors had given her. We are very thankful for this family and the amount of attention they were able to bring to SMA. I really hope that with all the attention something good can come out of it, for the cure/treatment of those living with SMA and for the prevention of SMA in future children.

UPDATE: So far, Avery’s Bucket List was able to raise over $300,000 (with those funds being matched by an unnamed donor). Also, Delaware state representatives have signed a bill to promote more awareness of SMA in their state for carrier testing and newborn screening. If only all the other states would follow!