In Support of Simon
Support Registry
Browse all the options to help, in one place.
Hello to my dear family, friends, and followers.
I'm Simon, and I'm ten years old. I have a rare disease called Sanfilippo Syndrome. This disease is sometimes called "childhood Alzheimer's" because it makes me forget things, like how to count, remember colors, or even sing songs. Damage to my brain and liver happens every day. My hearing and scoliosis are getting worse, and my hip bones are not as strong as they used to be.
I lost my ability to talk too. It's overwhelming for me. I don't understand what's happening, so I grunt and whine throughout the day to express my distress. Every day, my therapists and parents help me fight against these challenges while we wait for Enzyme Replacement Therapy treatment through an Expanded Access Program (Compassionate Use) to become available later this year or early next.
In the meantime, I'd like to receive MUSE stem cell and laser therapies, so I can make new brain cells to learn again, remember things, and think better before it's too late. I could regain my words, regulate my emotions, and reduce inflammation in my brain too. But, these cost a lot of money.
I lost my ability to talk too. It's overwhelming for me. I don't understand what's happening, so I grunt and whine throughout the day to express my distress. Every day, my therapists and parents help me fight against these challenges while we wait for Enzyme Replacement Therapy treatment through an Expanded Access Program (Compassionate Use) to become available later this year or early next.
In the meantime, I'd like to receive MUSE stem cell and laser therapies, so I can make new brain cells to learn again, remember things, and think better before it's too late. I could regain my words, regulate my emotions, and reduce inflammation in my brain too. But, these cost a lot of money.
I am lucky to have a lot of love in my life, and I am mostly happy. However, I do get upset when I can't do the things I used to enjoy or when I feel pain and confusion. I'm asking for your help to support me and my family as we continue to make the most of each day together. Here’s how you can help:
- Choose from Support Registry options: We are currently accepting financial contributions to help with the combined costs ($20,000) of these two complementary therapies:
- Dezawa MuseCells (Multilineage‑Differentiating Stress‑Enduring cells) to repair damaged tissue. https://podcasts.apple.com/pl/podcast/muse-cells-2026-the-endogenous-stem-cells-that-could/id1866190566
- Laser Therapy to target energy to the brain, inflammation, primitive reflexes, movement patterns, balance, visual tracking, and focus/regulation. https://www.youtube.com/watch
- 'Share' to Spread the Word to family and friends: The more people who know about my condition and journey, the more support we can gather.
- 'Follow' Updates to stay informed: We want to keep you updated on how I’m doing and how your support makes a difference.
Updates
Keep up to date as needs change.
Jun 15, 2026
Instagram Stories
Hello Amazing Supporters!We're in TN for an intensive week of MUSE ...
May 23, 2026
A Soon Approaching Opportunity Has Been Presented!
Doctors from Neorgana are hosting a special pop-up clinic in Tennes...
May 07, 2026
The Initital Consultation is Scheduled!
Simon’s Neuro Assessment Intake Consultation with a doctor is sched...
- Created Aug 17, 2025
- •
- Health Decline
- Report Support Registry
Support Registry
Browse all the options to help, in one place.
Words of Support
Donate, send meals, or lend a hand to include words of support.
Michelle Dahlenburg about 1 month ago • with donation
Lynnettelubinski about 1 month ago • on 'Instagram Stories' update
Ginnyluvalways about 1 month ago • on 'Instagram Stories' update
Fweinblatt about 1 month ago • on 'Instagram Stories' update
Mary Dullinger about 1 month ago • with donation
Fran and Chuck Weinblatt about 2 months ago • with donation