Everett

Origin: German, English 

Meaning: strong as a boar, brave

                                                 

Our son, Everett, is 9 years old. 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.

                                                           

We've teamed up with the Batten Disease Support and Research Association (BDSRA) because they are the main organization dedicated to helping families like ours affected by Batten disease. They support research, families, and the search for a cure.

By choosing to direct our FamFund to BDSRA's "Greatest Need", your donations will go where they can make the biggest difference right now. BDSRA will use these funds to support the most urgent needs within the Batten disease community, whether that's funding vital research, providing crucial support to families, advocating for better resources, or covering the costs to keep their work going.

We trust BDSRA to use your generosity wisely to have the greatest impact for everyone affected by Batten disease.