All parents are terrified with the thought that their child will be born suffering with some disorders that will shorten his or her life before it would even begin. Genetic disorders that still don’t have a treatment are among the worst nightmares of parents to be. Unfortunately for Laura and Michal Canahuati their five months baby was diagnosed with spinal muscular atrophy and doctors said that within 13 months she would die. The parents are now making a bucket list for the five months old spinal muscular atrophy baby patient.
Laura and Michael Canahuati have decided to launch Avery’s Bucket List. Avery is their five months old baby girl who was diagnosed with a genetic disorder that still doesn’t have treatment. With a life expectancy of just 13 months, Avery has a lot to experience during her short stay with her parents.
Spinal muscular atrophy is an incurable genetic disorder that affects muscle function by creating damage and weakness. Over time, the symptoms get so worse that the patient eventually dies. Avery has the worst type of spinal muscular atrophy, the Werdnig – Hoffman disease. This type of spinal muscular atrophy kills spinal neurons.
Avery seemed to be in perfect health at birth, but as days passed Laura, her mother, noticed something was wrong. According to Laura it became obvious that Avery was not progressing as she should. At the moment, the five months baby girl has lost the use of her legs and within a few days doctors expect her to lose use of her arms.
Laura Canahuati explained that she “started screaming” she doctors informed her and her husband of the diagnosis. Michael Canahuati said in an interview the situation pissed him off. “When they tell you your daughter will most likely die within the next 18 months of an incurable disease” said Michael, “that there are currently no clinical trials for, and that it’s the number one genetic killer of infants, it pissed me off”.
Eventually the couple took a very challenging decision. Instead of succumbing to depression, Laura and Michael decided to create Avery’s Bucket List. “We can watch her die, or we can let her live. And through letting her live we’re going to try and educate other people about this so they don’t have to go through it too”.