Chelsea was diagnosed with Lafora Disease in 2005 at age 15 and lost her fight in December 2016 at the age of 26.
The ravages of this rapidly progressive and horribly degenerative disease took everything, leaving her fully compromised both mentally and physically. Though unable to communicate, walk, or care for her own basic needs, Chelsea was mostly content and in no pain.
Chelsea was a spirited and joyful child. She loved life in a big way, was bright and energetic and curious about the world around her. She was well known for her enthusiasm and big laugh and wanted to participate in everything. Her love of school and learning always made her a favorite of the teachers, even though she was much too social and chatty in class. She saw the world though pure and non-judgmental eyes and made friends wherever she went. As Lafora disease progressively took more of her from us, Chelsea remained content and would show her sweet smile to all who came in contact with her.
Chelsea’s story was really not much different than any other child represented on Chelsea’s Hope. She had big dreams, aspirations and deserved a better life than this tragedy allowed. Lafora Disease affects one in 10 million children and there is currently no cure; the disease is always fatal.
Chelsea’s Hope represents HOPE for all children suffering from Lafora disease. As you read the diaries of our children, consider, “What if this were my child?”