Erin McCloskey, 11, has been a regular at Seattle Children’s her entire life. First diagnosed with a rare heart defect, a genetic specialist at Seattle Children’s later discovered she had fibrodysplasia ossificans progressiva (FOP). FOP is a complex condition that turns tissue, ligaments and tendons into bone that is outside the typical skeletal structure. Eventually, a person’s joints lose their mobility and it can cause breathing, movement and eating difficulties.
In August, Erin’s mother, Suzanne, sat with her in her hospital room as she did almost every minute of every day since April. Erin’s bed was stacked with stuffed animals and cards sent from members of the online FOP community who showered her and her family with support.