oneSMAvoice advocacy partner:
Fighting for Kaiden Foundation
Increasing visibility and promoting awareness of SMA to find a better quality of life for patients
Kaiden DeFazio was born on March 20, 2015. At his four month checkup, his pediatrician noticed his weight was a little low. At his follow up appointment, she was extremely concerned with his development. She recommended he see a neurologist immediately.
It did not take long for the neurologist to make the diagnosis: “Kaiden has SMA. From his condition, I can almost guarantee it is Type 1 or Type 2. It is the number one killer of infants and in the worst case scenario, he may not have long to live, possibly as short as a month or two.”
Kaiden’s neurologist and his team started working immediately to do all the tests that needed to be done in time for Kaiden to be part of an experimental study, which could possibly make him better or at least keep his SMA from getting worse.
As part of the double-blind study, Kaiden endured painful injections into his spinal cord with no anesthesia, and no assurance he was receiving the medicine. However, the study was successful. On December 23, 2016, Spinraza™ - the medicine in Kaiden’s experimental study – became the first treatment for SMA approved by the FDA. Now when Kaiden is receiving the treatments, it is with the knowledge that there is medicine in his injections. He is also able to have anesthesia during the injections.
Today Kaiden is happy kid who is loving, smart and kind. His medical needs and complications can’t keep him down. He is recovering from a recent back surgery and soon will be enjoying his electric wheelchair and will be back to getting around and causing mischief like other children.
While Spinraza™ is an exciting development, is not the final solution for those with SMA. It cannot reverse the effects of SMA that have already taken place, and while it works for Kaiden, it doesn’t work for everybody. There are also issues with pricing and access. But we are on the right path. More breakthroughs can happen at any time, and the Fighting For Kaiden Foundation will be among those supporting the search for a cure.
Our mission statement
The Fighting for Kaiden Foundation is a non-profit organization committed to enhancing the lives of those struggling with Spinal Muscular Atrophy (SMA) on multiple fronts. Directly, we strive to raise awareness of the disease on the local, regional and national levels. Our foundation provides need-based financial support to affected families for equipment and travel. We understand the value of peer support and organize support groups and information for SMA affected families in our area.
We provide directed donations for medical research in addition to medical equipment and services for SMA patients across the country.
Our goals are driven by our devotion to improving the lives and finding a cure for those with SMA.