In Support of Simon
❤️ Help Us Give Simon More Time
Simon is 10 years old. He's losing his words, but not his desire to connect with the people he loves.
Simon has Sanfilippo syndrome (MPS IIIB), a rare, terminal neurodegenerative disease often called childhood dementia.
Because his body lacks an essential enzyme, harmful substances accumulate in his cells, progressively damaging his brain and body. Over time, children with Sanfilippo lose the abilities they've worked their entire lives to develop—including speech, memory, mobility, and eventually the ability to eat and swallow safely. Many experience seizures, movement disorders, and significant suffering. Tragically, many do not survive beyond their teenage years.
There is currently no cure for Simon's disease. But there is hope. ❤️
An Expanded Access Program (Compassionate Use) for enzyme replacement therapy is expected to become available in the coming months.
Unlike treatments that primarily manage symptoms, enzyme replacement therapy is designed to address the underlying enzyme deficiency responsible for Sanfilippo syndrome. Although investigational and not a cure, it offers the possibility of reducing harmful substance accumulation and potentially slowing disease progression.
For Simon, this may be his most important opportunity to preserve the abilities he still has.
Our Goal: $75,000 for One Year of Treatment
If Simon is accepted into the program, our family will need to temporarily relocate to be within driving distance of the treatment center, where he is expected to receive weekly enzyme replacement therapy infusions for at least one year.
We are raising $75,000 to help cover the anticipated costs of surgery to implant an Ommaya reservoir, medical expenses not covered by insurance or the treatment program, temporary housing, weekly travel, and other treatment-related necessities.
That's 52 weeks of treatment we're hoping to make possible.
We don't yet know when Simon might be accepted or exactly how much of his care will be covered. But we want to be financially prepared so that, when the opportunity comes, finances won't stand between Simon and treatment.
Because Sanfilippo doesn't wait. And neither can we.
Another word remembered matters.
Another meal eaten safely matters.
Another game played matters.
Another moment of connection matters.
Another day of Simon being Simon matters. ❤️
We know this treatment isn't a cure, and its potential benefits for Simon remain uncertain. But it represents hope—hope that we might be able to slow this devastating disease and preserve more of the little boy we love.
Please help us give Simon more time to simply be Simon.
Every donation, every share, and every act of kindness brings us closer to being ready when his opportunity comes.
With love and gratitude,
Simon & Family
Facebook: @HelpSimonNow
Instagram: @HelpSimon
TikTok: @Simons_Shot
Instagram: @HelpSimon
TikTok: @Simons_Shot
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
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