August is Spinal Muscular Atrophy (SMA) Awareness Month, and Global Genes is delighted to hear from Kris DeFazio, grandmother to Kaiden, and Co-Founder, Board Chair & Executive Director of the non-profit and Global Advocacy Alliance member, Fighting for Kaiden.
by Kris DeFazio
In October of 2015, after several months of dead ends, Kaiden, seven months old at the time was diagnosed with Spinal Muscular Atrophy (SMA) Type 1. The neurologist gave us the sad news that he would probably have only two months to live, but there was clinical trial recruiting for the first possible treatment for SMA. The decision for the participants was to be made just two days later so we had to act quickly to get the genetic sequencing done to give him a chance to enter the trial. Kaiden was eligible and thankfully was enrolled in the double-blind Phase 3 trial. We quickly could tell Kaiden was getting the drug and approximately one year later Spinraza was approved by the FDA and we were made aware that he had been getting drug the entire time.
Kaiden’s condition was quite advanced and in his first two years he had four extended hospital stays for pneumonia, RSV and flu viruses which left his respiratory function quite diminished. At the age of three, after almost a full year of having his left lung down, he was given VEPTR rod surgery to open his ribcage and work on his 110 degree spinal curve. After two infections and six spine surgeries before he was four, Kaiden got pretty strong and his curve improved to 64 degrees. As a family, we decided to move from Maryland to North Carolina to seek treatment at the Duke Children’s Hospital Neuromuscular Center. Kaiden’s next two years were the best we could have hoped for, we explored every park in the area, he was able to start virtual school and go to restaurants very often where he loved to interact with people and have his cup of ice. We even were able to take multiple boat trips on the lake.
Sadly, Kaiden’s fight against SMA ended on November 17, 2022 after a four-month long struggle with COVID. Kaiden’s loss has left a huge emptiness for his family and friends. His elementary school now holds food drives in his honor and did an amazing tribute in the yearbook. The SMA Community has rallied around our family. Unfortunately the ten months since Kaiden’s passing have been rough on the SMA Community with quite a bit of loss.
Along with other caregivers to children with SMA, our family founded the Fighting for Kaiden Foundation in November 2015 to help families thrive while battling SMA. To date, we have provided wheelchairs, generators, blenders, pulse oximeters, suction machines, adaptive equipment as well as fun items like IPads, bumper cars and sleds to over 500 families. Additionally we have provided education for the community as well as creating OneSMAVoice as a platform for information and communication.
One of Kaiden’s favorite things to do was to “help his friends” whether it be help packaging grants or supplies, help at fundraising events or just do videos. It is Fighting for Kaiden’s mission to keep doing what Kaiden loved and to help his friends.
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