Jaxon Chavez

California educators Craig and Sophia Chavez were excited to start a family. All of Sophia’s prenatal appointments looked great, and she had a healthy pregnancy and delivery. Their son Jaxon was born on March 7, 2020, and the family could not have been more overwhelmed with joy. When he was born, Jaxon passed all of his basic genetic screenings, although he did show signs of respiratory distress and occasional feeding issues. Despite this, Jaxon hit all of his early milestones on time. He learned to crawl and walk early and was extremely social. Even though he appeared healthy, his parents still felt like something was wrong.

At around two years old, Jaxon’s parents noticed that his language wasn’t developing as it should. With Craig being a special education professional, the Chavez family had largely ruled out autism as the root cause. They suspected the issue was hearing-related and took him in to be screened. This screening revealed a large fluid buildup in both of Jaxon’s ears, which they initially thought might explain his delayed speech and recent dizzy spells. Additionally, their neurologist suspected that Jaxon might have had some brain lesions, causing his delays. Around this time, their neurologist was going on maternity leave, and she wasn’t too worried about Jaxon’s condition.

A few months later, however, Jaxon began shuffle stepping, which was cause for serious concern. Sofia and Craig had to wait months for an MRI and were told afterward that their son had “leukodystrophy of the brain.’’ To better his diagnosis, Sophia and Craig did their own research on this devastating disease. Their next step was to order a leukodystrophy genetic panel test, which confirmed that Jaxon had Multiple Sulfatase Deficiency. After his official diagnosis, Sophia immediately reached out to the United MSD Foundation for more information.

While the news was devastating, the Chavez family knew they wanted to help raise awareness and research funding to support all children with Multiple Sulfatase Deficiency. They immediately jumped in and rallied their community together in Jaxon’s honor.  They hosted a pop-up Zebra Run in 2023, during which their entire school came out to show their support and raised around $30,000. 

In May of 2023, Jaxon unfortunately began to regress. Despite this, he still went to preschool and was known to be friends with everyone he met. Other parents would constantly tell Craig and Sofia about the positive impact Jaxon had on their children and how he was everyone’s best friend. Jaxon’s personality shone through no matter what, and he was loved by everyone who met him. 

In 2024, the Chavez family welcomed their second son, Max. This sweet, bubbly baby entered the world with the help of in vitro fertilization with pre-implantation genetic testing to ensure that he would not be born with MSD. Jaxon and Max got to share several months together, and the Chavez family holds those memories dearly. 

On May 5, 2024, Jaxon passed away from Multiple Sulfatase Deficiency. His family continues to work with the United MSD Foundation to spread awareness for this devastating disease and push for a cure so that one day families will no longer have to lose their child to this devastating condition. 

Written by Emily Arbuckle (Student Ambassador)