Today marks the third anniversary of Simon’s campaign, and while much has changed, one thing remains constant: the deep love surrounding Simon and the fight for his future. To mark this moment, his mom, Alina, has written a powerful update in Simon’s voice—an honest, emotional reflection on what the past three years have brought.

Here is Simon’s story, as told by his mom, Alina:

"Remember me? I’m Simon. You met me three years ago when I was five years old.
I have Sanfilippo Syndrome. It’s a terminal, neurodegenerative rare disease. It causes children (like me) to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die, often before the second decade of life.
Because of its neurodegenerative nature and multi-system impact, Sanfilippo Syndrome is often called “childhood Alzheimer’s” or “childhood dementia.” Currently there is no FDA-approved treatment or cure.
Since we first met, Sanfilippo Syndrome has continued to damage my brain. I’ve forgotten how to count, correctly identify colors, and sing my favorite songs. Sometimes I forget to chew my food sufficiently before swallowing, which puts me at risk of choking.

Other parts of my body are affected too. My hearing loss and scoliosis are worsening. And, my femoral heads are deteriorating.

My many therapists and parents are constantly working to slow the progression of my disease. Because of their efforts, I am living my best life! My favorite activities are dancing to live music, running on the hike and bike trail, and shooting hoops.

I love and I am loved. I’m happy most of the time. But I’m grumpy when I’m confused, hurt, and can’t do things that I used to be able to do.

You can continue to follow my journey through life:
-Facebook: https://Facebook.com/HelpSimonNow
-TikTok: https://TikTok.com/@Simons_Shot
-Instagram: https://Instagram.com/HelpSimon
Please watch and share my three-minute video about my fight to find a cure or treatment options: https://youtu.be/WK1FFhiZW5o?si=X2E0q5bKRzipIhNO" 

Simon’s journey is filled with both heartbreak and hope—and through it all, he continues to live with joy, strength, and love. As we honor this milestone, we invite you to share his story, follow his journey, and stand with families fighting Sanfilippo Syndrome. Every share, every voice, brings us one step closer to a future with treatment and, someday, a cure.