Everyone please visit this blog: http://averycan.blogspot.com/.
It is a brave blog about a 5 month old baby who has Spinal Muscular Atrophy. Her blog is an adorable account of daily happenings written from the baby's perspective. The emphasis is on living while dying, not the other way around. Children with SMA don't typically make it to their second birthdays.
This family is incredible to put themselves out there in order to raise awareness for the disease and to encourage the testing that is available to prospective parents that could let them know if they carry the genetic code for SMA. Unfortunately, most parents don't even know the testing exists. I know I didn't.
Way to go Avery! I love your bucket list!!
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