Nicholas Dainiak of Bedford, NH, was born on May 9, 2003, weighing 9 pounds and 3 ounces, bringing joy and light to everyone around him. Full of energy and curiosity, Nicholas loved Spiderman, Buzz Lightyear, trains, swimming, soccer, and flag football. His favorite place in the world was Disney, where his love for adventure came alive. At age 5, Nicholas was diagnosed with CLN2 Batten Disease, a rare and fatal neurodegenerative condition. Despite the challenges he faced, Nicholas continued to inspire those around him with his courage, resilience, and spirit. His devoted service dog, Shane, was by his side at all times, offering companionship, detecting seizures, and encouraging him to walk when he was able. Above all, Nicholas loved his younger brother William more than anything.

Nicholas passed away on his 11th birthday, May 9, 2014, but his spirit lives on. We are inspired by his spirit, energy, and promise to never give up until there is a cure for Batten Disease.

THANK YOU FOR SUPPORTING OUR FAMILY AND THE MISSION TO HELP ALL BATTEN FAMILIES!

We are honored to partner with the Batten Disease Support and Research Association (BDSRA) in our mission to support families affected by Batten Disease. Through our partnership, donations made to the "In Memory of Nicholas Robert Dainiak: Hope for a Cure" will directly impact families by providing them with essential resources, education, and support. Whether it’s helping families navigate the complexities of the disease, or offering emotional and practical support, your contributions ensure that no family has to face this journey alone.

• The Greatest Need.  These funds will be used at the discretion of the BDSRA Foundation where the greatest need at the time is.  This means that the funds could be used for administrative purposes, or for any of the other mission areas. 

• Family Support.  These funds are used to support our families with grants for emergency travel, bills, unexpected costs, safety hazards, funeral expenses and more.  Ideally, this fund will be healthy enough to also fund grants for accessible vehicles, medical equipment, home modifications, and other large requests.