Our son, Everett, recently turned 8. During his kindergarten year, we noticed a rapid and significant loss of his vision. This began a seven-month search for answers that ultimately led to the devastating diagnosis of Batten disease CLN3, which we received just three days after his sixth birthday.

Batten disease CLN3 is a rare and progressive neurological disorder with no cure. This diagnosis means Everett will continue to lose his abilities over time.
Despite these challenges, Everett enjoys listening to audiobooks on his Yoto Mini, wrestling with his big brother Henry, building intricate creations with Lego and magnetic tiles, and playing with our miniature schnauzer Oliver, and is generally a happy, silly kid. He's an irreplaceable part of our lives, and we are committed to providing him with the best possible care and support as this disease progresses.

The reality of Batten disease requires significant resources for medical care, therapies, and necessary adaptations. We are fundraising to help meet these growing needs for all affected families.