The bracelet above was made for a mother. Her child, Avery, passed away due to SMA. Like for so many children, SMA took her life quickly. Mama Bracelets (owned by Lindsay) made a memorial bracelet for Avery's mother.
The picture shows the "Cure SMA" Open Circle in the forefront with the charm that reads "Avery" in the background.
Avery was diagnosed with SMA Type 1; this type is considered the most severe type of SMA and depending on the level of severity, the life of a child can, and often does, end before two years of age. There are kids with SMA Type 1 that do beat the odds...their lives are spent with very little if no muscle function. They are surrounded by the love and care of their families who do everything they can to keep their kids alive and happy despite SMA. Regardless of which type a child has, SMA robs them, and their families, of so much.
Avery gained much attention during her short time on this earth. Her parents had a "bucket list" of things they wanted Avery to accomplish while she was alive. Her popularity grew and then suddenly...she was no longer with us.
Her death brought her story to an even higher level. Along with her, SMA also was now the spotlight...the disease that is so rare yet so devastating was on stage. People from around the country, and the world, were touched by Avery and her bucket list while at the same time learning about the disease that took her young life.
People learned that SMA was named the #1 neurological disease closest to a cure of among 600+ diseases according to the NIH (National Institute of Health). People became aware of Dr. Kasper's Gene Therapy and the goodwill donations came pouring in to his program. Hundreds of thousands of dollars in a very short amount of time was raised to help fund Dr. Kasper's research and, in turn, helped get it launched into human clinical trials.
Simply stated, Dr. Kasper's approach to SMA is to virally infect people who suffer from Spinal Muscular Atrophy with the SMN gene that they are missing. Once they have this gene, it is hypothesized that the disease will no longer exist in that person. Hence, a cure.
We move forward with a jump start to our hope. We look to the future with new eyes in light of the prospect of curing this awful disease. We take a breath knowing that anything can happen.
We must also, in the midst of it all, take moments to keep Avery and every other person who has died from SMA, along with their families, in our hearts and minds. For through their struggles, their anguish, their perseverance, and their strength we are here..at this point...on the verge of what we all hope for as a breakthrough.
The charm on the bracelet pictured above is in the background, just as Avery is now...but it's there, no mistaking it, it's there...and so is Avery along with all those who passed before her...they are with us as well...holding hope close our hearts.
