You probably have never heard of a disease called SMA. The parents of Avery Lynn Canahuati, unfortunately, know exactly what it is. They created a “Bucket List” for their daughter, and posted her progress on a blog that was being updated by her father. Avery has now passed away. Her parents want there to be more awareness of SMA.
SMA stands for spinal muscular atrophy. It is an incurable disease that can be caused by a genetic defect. SMA attacks muscles and causes inefficiency of major body organs, (especially the organs in the respiratory system). This disease leads to death. The life expectancy for children born with SMA is less than ten years of age. There are two types of SMA. Kids who have SMA type 1 have a life expectancy of less than two years of age.
You may not have heard of SMA. Most people have not. Most OB/GYN’s do not offer tests for it. While there are many different genetically heritable diseases that can be screened for, SMA is not included when preforming genetic pre-screening tests that determine if parents might pass a genetic disease onto their children.
Avery Lynn Canahuati was born with SMA type-1. Her parents had never heard of the disease. Only one in 6,000 babies is born with one of the four types of SMA. Only one out of every forty people is a carrier for the gene. Avery’s parents hope that the information they shared about their daughter will bring more awareness of SMA.
Avery’s father, Michael Canahuati created a blog that included a “Bucket List” for his daughter. He blogged about her progress through the items on the list, and included photos. It included items that were suggested by him, by Avery’s mother, and by people who found the blog and left comments with suggestions.
I suppose some might consider it to be morbid to create a “Bucket List” for their terminally ill child. However, I think it is a good way for parent to cope. Instead of being sad, all the time, knowing that their child’s illness is not going to allow for a long life, Avery’s parents found a way to celebrate, every day, about something that was a new experience for Avery.
Avery accomplished quite a few things on her “Bucket List”, with the help of her parents and other people. These include: “Meet someone else with SMA”, “Be on TV”, “Be on the radio”, “Be in the newspaper”, “Wear a big bow”, “Have a birthday party”, and “Reach my 5 month birthday”.
Image by Henry Burrows on Flickr