05/08/2026
There’s so many new faces here and we’ve been completely overwhelmed by the love and support over the past few months. After such an incredible Rare Disease Day, we realized we’re overdue for a proper introduction. 💙
For those who are new here, this is Aiden. He just turned 9 years old and has the juvenile form of INAD (Infantile Neuroaxonal Dystrophy), an ultra-rare, progressive neurodegenerative disease with no approved treatment or cure… yet.
✨ Aiden hit all of his milestones growing up, though he was considered speech delayed and less conversational than other kids his age.
✨ Around ages 5–6, we started noticing changes — balance issues, falls, and serious accidents that eventually led us to search for answers.
✨ In 2021, he was initially diagnosed with autism due to his speech delay, but many neurological signs were overlooked for years. In 2024, a simple genetic test at Children's Hospital Los Angeles finally revealed INAD, a disease so rare many doctors have never seen a case before.
✨ INAD is often described as a combination of pediatric ALS and Parkinson’s disease. It slowly steals a child’s ability to walk, talk, eat, and eventually breathe.
✨ INAD is inherited genetically, meaning both of Aiden’s parents unknowingly carried one mutated PLA2G6 gene with no symptoms themselves. His younger brother is thankfully only a carrier. Many INAD families tragically have multiple children affected, which is why awareness and access to genetic testing matters so much.
But beyond the diagnosis, Aiden is simply… Aiden. 💙
He’s the most popular 9-year-old among his local high school BFFs, has an army of supportive friends at school and throughout the community, and is known for his contagious smile, dimples, funny one-liners (“Peace Out Girl Scout!”), love for music (especially Taylor Swift), and being everyone’s best friend.
Right now, gene therapy is our greatest hope. Through the incredible work being done by the INADcure Foundation, a potentially life-saving gene therapy has already been manufactured for 10 children, but the clinical trial still needs FDA approval and additional funding to move forward.
Gene therapy has already changed the lives of children with other rare diseases — some even regaining abilities once thought permanently lost. We are fighting every day for Aiden to have that same chance.
After Aiden’s diagnosis, we founded AJS Foundation with one mission: to change the future for children like him through research, awareness, and treatment development.
What started as sharing our son’s story has become a growing community of people helping us fight for hope, funding, and progress for rare disease families everywhere.
Whether you’ve been here since day one, just found us recently, or followed because you’re a huge Pretty Little Liars fan — thank you for being here. Say hello below and let us know where you’re from. 💙
Thank you for helping us make sure children with rare diseases are seen, valued, supported, and never forgotten.
You can learn more or help join our fight at www.AidensATeam.com
