Grant Peter Severance passed away peacefully on the morning of December 3, 2024, at age eleven, after a courageous battle with CLN2 Batten disease. Grant (and his twin sister Vivian) was born in Lake County, Illinois in January 2013 to parents Allen and Vanessa Severance. Grant loved everything Dr. Seuss, Thomas the Train, Little Einsteins and Mickey Mouse Clubhouse. At the age of three, he began having seizures, which led to the CLN2 Batten disease diagnosis just prior to his fourth birthday and paved the way for numerous adventures. His strength and courage in facing Batten disease inspired his parents and friends to coin the phrase "Rise Up For Grant", which became the family motto of not letting Batten disease hold the family back from any adventure.  Grant was awarded a Make A Wish trip to Give Kids The World, which included time at Dr. Seuss Land, Disney World, an airboat ride and a trip to the beach; he ran the bases at Wrigley Field; he ended up naked on an airplane after a diaper accident on his way to a Disney Cruise; he took numerous trips to John and Carolyn's "cottage" in Minocqua; he adventured in Alaska with grizzly bears, whales, glaciers and salmon; he was featured on the Bassmaster website; he loved anything with a steering wheel and was happiest when he could drive a boat, where he loved to go fast. In 2023, as travel became more difficult, Grant convinced his parents to move to Lake County, Florida in search of sunshine, beaches and no more winter or snow to shovel. He inspired fishing tournaments, fashion shows and other ways to raise awareness of Batten disease and advocate for a cure, which still eludes this small but mighty community. When Brineura (enzyme replacement therapy) was approved, he pioneered the first commercial treatment in Chicago at Rush University Medical Center and laid the foundation for other affected children to receive treatment locally. We are grateful for the medical teams at Nationwide Children's Hospital of Columbus, OH, Rush University Medical Center of Chicago, IL, Creative Rehab of Gurnee, IL, University of Florida Shands Children's Hospital of Gainesville, FL and Nemours Children's Hospital in Orlando, FL, BioMarin of San Rafael, CA and the BDSRA Foundation for their excellent care and guidance as we adventured along with Batten Disease. We appreciate his teachers at Laremont School in Gages Lake, IL, especially Ms. Rebecca and Ms. Ashley, along with numerous aides and support staff, including his personal chauffeurs to school, Laurel and Marcy, who each provided such excellent care for our golden boy.  We are thankful to all that supported Grant and his family as they journeyed with Batten disease. Grant is survived by his parents Allen and Vanessa, twin sister Vivian, his cats Lou Bear and Lucky Scrub, paternal Grandmother Sue Severance of Woodstock, IL, maternal Grandfather Lloyd (Joanne) Clavey of Cleveland, TN and numerous uncles, aunts, cousins and extended friends and family. He is proceeded in death by paternal Grandfather Peter Severance, maternal Grandmother Audrey Gerretsen, his dog Trixie and his Auntie Scarlett. A celebration of life is planned for Spring 2025, with details to be announced in the coming days. Memorial donations may be made to the Severance family, which will be earmarked for future benevolent distribution.  Allen Severance PO Box 74, Minneola FL 34755-0074

Obituary submitted by family.