We found hope. Now we need help funding it.

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.

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.

There is currently no approved treatment for children like Elle.

But there is something we desperately want the world to know:

There is hope.

When Elle was diagnosed, we were told there were no treatment options for her. We refused to accept that as the end of her story.

Over the past year, we have searched around the world. We have spoken with scientists, physicians, biotechnology companies, foundations, advocates, and other Sanfilippo families. We have traveled to meet researchers and understand every potential treatment path we could find.

And that search led us somewhere we once weren't sure existed.

We found a potential path toward treatment.

Scientists have spent years developing a gene-therapy approach for Sanfilippo Type C.

There is a path to move it forward. And there are children waiting.

What is standing in the way now is funding.

For our family, that realization has changed everything.

We are no longer simply asking: “Will someone discover a treatment for Elle?” We are asking: “Can we raise the money needed to help move a potential treatment toward children before it is too late?”

That is the race we are in.

OUR FIRST MILESTONE: $100,000

The full path toward treatment will require millions of dollars.

But we don't have to raise it all at once. We have to take the next step. And then the next.

Our immediate goal is to reach $100,000. Nearly $60,000 has already been raised by an incredible community of people who have decided to stand with Elle.

Now we need your help reaching the next milestone.

If 1,600 more people give $25, together we can raise the approximately $40,000 remaining to cross $100,000.

We don't need one person to do everything. We need thousands of people willing to do something.

$10 matters. $25 matters. $50 matters. $100 matters. Every gift moves us forward.

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.

Every month matters. Every child matters.

Help 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