"Texas couple pen a 'bucket list' for their baby with fatal illness" by Hannah Kilpatrick

Summary

Texas infant, Avery Canahuati is not yet 6-months-old and is expected only to live for 18 months at best. Avery was born with a rare genetic disorder – Spinal Muscular Atrophy Type One, the worst of an incurable disease caused by a genetic defect that attacks the muscles, especially the respiratory system. One in 40 people are carriers of the gene and Mike and Laura Canahuati had a 1-in-1,600 chance of both being carriers. There is no cure for the disease and very little research has been done. “We could go around and cry all day long or we can enjoy the time we have with her,” her mother said. “We have all the time in the world to cry when this is over.”  Avery’s parents decided to take their daughters story online, creating a blog and a “bucket list” written as though Avery will make it past age 2 and experience life’s milestones as a healthy girl. They’ve made memories like her first Easter, her first trip to college, her first innocent kiss, and her first little girl tea party with her mom. “We can watch her die or we can let her live,” her father said. “And through letting her live we’re going to try to educate other people about this so they don’t have to go through it too.” Mike and Laura promise to chronicle every moment in a very short life so that we remember Avery; remember a disease that needs more research, and remember how they spent each day.

Analysis

This story truly brought me to tears. It must be so hard and so painful knowing that your daughter is going to live such a short life. I think that they have done the right thing though by making memories with their daughter while she is still alive. You can tell that they are wonderful parents who care about their child so much and want to make her happy. It is just so unfortunate that she has a disorder that will prohibit her from living a long life. This was such a beautiful, tragic, and touching story and I will keep the Canahuati family in my thoughts and in my prayers. I hope that people will become more aware of this rare genetic disease and that in turn, more research will be done to find a cure. I just wish that this family would not have to go through the suffering of losing a daughter, because I can’t even begin to imagine how heart wrenching it must be.

Here is the link to my article:

http://www.cnn.com/2012/04/28/us/texas-baby-bucket-list/index.html