BELLEVUE – Before she left University of Minnesota Masonic Children’s Hospital, 14-year-old Layla Sands took a dry erase marker and wrote a reminder to herself on the window of her room, where she’d viewed the world for more than a month.
“You don’t know how strong you are until being strong is the only choice you have!” it read.
Those words have been Layla’s mantra since she was a little girl. Layla and her mother have repeated them countless times over the years — through blood draws, platelet infusions and hospital stays.
They said them to one another as Layla watched friends go on roller-coaster rides and swim in Michigan’s lakes without her, when the bone marrow failure she’s been struggling with for nine years left her drained and dizzy.
They said them through more than five years of hosting and helping with bone marrow registration drives in the hope that they’d find a match for Layla, who has dyskeratosis congenita, a rare genetic condition that affects one in 1 million people.
People with the condition are born with abnormally shortened telomeres, the molecular ends of a person’s chromosomes. About half of all people with dyskeratosis congenita experience some form of