Two Batten families recently had their stories told by local media.
The Heath family, residents of Loudonville, Ohio, were recently featured by NBC4 Columbus and News 5 Cleveland for a recent book signing.
Peter Heath, son of Beth and Joe who was diagnosed with Batten disease a year ago, recently wrote a book featuring his cane named Marshmallow titled, “The Adventures of Marshmallow and Peter.”
The book was published by Adventures of Pookie LLC and can be purchased at Barnes and Noble and online on Amazon. Half of the proceeds will go to BDSRA Foundation.
Charlie Niciejewski, a 7-year-old first grader, was diagnosed with Batten disease at five years old, but that hasn’t stopped him from putting smiles on others’ faces as well as his own.
The Niciejewski family, residents of Point Place in Toledo, recently had their Batten journey shared by WTOL11 Toledo. Charlie’s school district, Washington Local Schools District, partnered with The Ability Center to get him his own set of braille books.
Shared your story with local media? Let us know! Email BDSRA Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org and we will share!
BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give the community a platform to share their stories.
Sharing your story allows BDSRA to help raise awareness for Batten disease and advocate for improvements and developments for our three pillars — Support, Research, and Advocacy.
