The Treatment & Why $1M
The Science That Can Save Sybil
There is real hope for Sybil — and it exists right now.
A brilliant team of doctors led by Dr. Timothy Yu at Boston Children’s Hospital is working on an experimental treatment called Antisense Oligonucleotides (ASOs). This cutting-edge therapy targets the faulty gene that causes Batten disease.
ASO treatments have already shown success in treating other rare genetic disorders. For Sybil, this treatment could slow or even stop the progression of Batten disease — preserving her ability to walk, talk, and see.
But because it’s experimental, insurance doesn’t cover it. The only barrier between Sybil and her life-saving treatment is funding.
The Urgency — Time Is Everything
Every day, Batten disease continues to take from Sybil — her vision, her independence, and her quality of life. But we still have time to act.
The science is ready. The doctors are ready.
All that’s missing is the funding to make it possible.
We need to raise $1 million to begin Sybil’s treatment before her disease advances beyond the point of recovery. This funding will cover:
- The development and manufacturing of her personalized ASO therapy
- Medical care and monitoring through her clinical team
- Research and testing that could open the door for other children with Batten disease
Every dollar brings us closer to stopping this disease — not only for Sybil, but for countless families praying for a cure.
Lighting the Way for Others
This fight is about more than one life — it’s about changing what’s possible for every family living with rare disease.
By helping Sybil, you’re helping pave a path for future treatments that could save hundreds of other children. Your support fuels both the science and the spirit of hope that drives breakthroughs in rare disease research.
We believe God placed the right people, the right science, and the right community in Sybil’s life for a reason. With your help, we can give her a future — and shine light into the darkness for others.
Support Sybil Shines Today!
Time is precious. Sybil’s treatment is ready — but it can only move forward with your support. Every dollar helps fund life-saving research and care that could stop the progression of Batten disease. Join us in the fight to save Sybil’s life and pave the way for a cure.