💛 Castillote Family Support Registry

Welcome to our Support Registry — a place created to guide those who want to support the Castillote family in this challenging season. With the help of Support NOW, we’ve gathered everything in one place.

We keep our faith in Jesus and stay focused on Maleea and Malachi's quality of life as they both bravely battle Batten Disease — a rare, degenerative illness. Every day brings new challenges, and while we continue fighting for hope, we humbly ask for help.

💔 Batten’s is cruel. It slowly strips away abilities like walking, seeing, speaking, and eventually even thinking. Our two young adults now face:

And it’s all times two.

Despite everything, Malachi is the only surviving adult with this rare form receiving treatment — still walking, talking, and eating (with help). Maleea is not far behind in progression. We want to give them the therapies, support, and small joys they deserve while we still can.

🙏🏽 Your support makes a real difference.

💡 Learn More / Support Their Journey

📺 Watch: KIRO7 News Story
❤️‍🩹 Learn: TheirHopeToLive.org
🛒 Shop to Support: Bonfire Store
💞 Follow Our Journey: CaringBridge

💔 Our Journey With Batten Disease
Supporting Maleea & Malachi

This past year has been the hardest of our lives. Sharing our family’s story has been overwhelming, but also filled with hope and love from our community.

Our two children, Maleea and Malachi, were the first siblings in Washington diagnosed with a rare, terminal disease called Batten (CLN2). Their diagnosis came just as the pandemic hit in 2019. Since then, our family’s needs have grown far beyond what we can manage alone.

Batten slowly takes everything — the ability to see, walk, speak, eat, and think clearly. It's a heartbreaking journey, and for us, everything we face is times two.

Despite it all, we’ve stayed focused on giving Maleea and Malachi the best quality of life:

Access to life-extending therapies

Daily care and medical needs

Small joys, meaningful moments

Safety and dignity as the disease progresses

We are not a flashy or extravagant family. We just want to keep our kids comfortable and cared for as long as we have them.

In 2024, both Reiff and I had to step away from our careers to become full-time caregivers. Financially, it's incredibly difficult — and emotionally, it’s beyond heavy. Batten is a mix of dementia, MS, and Parkinson’s… in young adults. It's cruel, relentless, and ultimately, fatal.

We know what’s ahead — feeding tubes, wheelchairs, blindness, memory loss, full-time care. But we’re fighting for every day, every smile, every chance for them to feel seen and supported.

💛 What’s Next
We’re launched a website to share Maleea and Malachi’s journey and hope to become a nonprofit (501c3) to support other young adults facing Batten in the future. We want to partner with adaptive companies, attend conferences, and raise awareness — because young adults like ours often get missed by the system.

Our dream isn’t big.
It’s simple:
Comfort. Care. Love. Dignity.

We know there is no cure yet. But until then, we will keep showing up, loving hard, and doing whatever we can to give our kids a life worth living.

Thank you for walking this road with us.
~ The Castillote Family