This is our daughter Elle.

Elle is 8 years old. She loves the beach, dancing, singing, trampoline parks, playing with her sisters, playgrounds, and spending time with friends. She is joyful, loving, determined, and has a smile that will light up an entire room.

This past year, Elle was diagnosed with a rare form of childhood dementia—Sanfilippo syndrome (MPS III).

Sanfilippo is a progressive neurodegenerative disease. It slowly destroys the brain and nervous system. Children with Sanfilippo gradually lose the abilities they have worked so hard to gain - the ability to communicate, learn, walk, and eventually recognize the people they love most.

Without a cure, Elle will gradually lose the ability to speak, learn, play, and recognize the people she loves most. As parents, there is nothing more heartbreaking than knowing time is not on your child's side.

There is currently no approved treatment for Sanfilippo. But there is hope. Researchers around the world have developed promising therapies that could fundamentally change the future for children like Elle if they can be funded and brought to patients.

The day we received Elle's diagnosis, our world changed forever.

As parents, we have learned that Sanfilippo touches every aspect of a child's life and impacts entire families.

We have also learned that while Sanfilippo is rare, we are not alone. There are families around the world fighting the same battle and desperately searching for hope.

Alongside Sanfilippo, Elle also faces autism, epilepsy, hearing loss, intellectual disability, anxiety, sensory challenges, and significant speech and language delays. She works incredibly hard every day through ABA therapy, speech therapy, occupational therapy, medical appointments, and ongoing testing.

Despite all of this, Elle continues to show us what courage looks like.

Every night when we tuck Elle into bed, we are reminded of what is at stake. We are fighting for more birthdays, more trips to the beach, more dances in the living room, more laughter with her sisters, and more time for Elle to simply be a child.

That is why we created this fundraiser.

Over the past year, our family and an entire community of parents, advocates, scientists, physicians, and researchers have been working tirelessly behind the scenes.

As a family we have dedicated ourselves to raising awareness of Sanfilippo, connecting with other families across the world, meeting with researchers, and helping create the fastest possible path to treatments for children like Elle.

Recently, we traveled to Florence, Italy, for the International MPS Conference, where we met with some of the world's leading scientists, doctors, advocates, and Sanfilippo families.

What we learned gave us hope. The science is here. Today.

For many years, the challenge was scientific discovery. Today, the challenge is funding.

Through our conversations with researchers across the world, we identified multiple promising treatment programs focused specifically on Sanfilippo Type C—Elle's form of the disease. Several are approaching the stage where additional funding will significantly accelerate their path toward children.

We do not yet know which program will ultimately become the treatment that changes Elle's future.

But we firmly believe that one of them will.

And that is why there can be no delay.

Every month matters. Every child matters.

Researchers are working tirelessly. What is needed now is funding to move promising therapies from the laboratory to children waiting for a chance at life.

Our goal is simple: help accelerate the treatments that can change the future for children living with Sanfilippo.

The reality is that thousands of children around the world are living with Sanfilippo and related disorders. With sufficient resources, these lives will be changed forever - and many children will be saved.

Funds raised through this campaign will support research, education, awareness, and efforts that advance treatments for children living with Sanfilippo. As we continue building our long-term efforts, our focus remains simple:

Give children like Elle a chance at more time.

If you feel moved to help, we would be deeply grateful. We know we cannot do this alone.

No parent should have to race a disease that is stealing their child's future. But together—with families, friends, researchers, physicians, advocates, and supporters around the world—we believe we can change what is possible for children living with Sanfilippo.

We believe Elle's story is still being written.

1. Please donate what you are able. A gift of any size truly matters.

2. Please share this page with everyone you know through social media, email, and personal connections.

3. If you have connections to philanthropy, media, biotech, healthcare, research, or other opportunities that could help advance this mission, please reach out to us.

Please help us give Elle—and every child facing Sanfilippo—a chance at life.

It has to be now.

Whether you donate, share this fundraiser, pray for Elle, or simply help raise awareness, you are joining a community working toward the same goal:

A future where children like Elle get the chance to grow up.

Thank you for loving our daughter.

Thank you for standing with families affected by Sanfilippo.

And thank you for helping us fight for a cure.

-David and Chelsea Walline