Kaylee Massey shares her grief online after daughter Poppy died at nearly 15 months old in April 2023 following a rapid decline from TBCD leukodystrophy. She and husband Jake are raising their two older children and honoring Poppy through traditions and a backyard mural.
Poppy had been diagnosed with the rare neurological disease only six months before she died. Massey began posting about her before knowing how the story would end, initially to process life as a medical parent. She says the online community has helped her grieve; she shares painful experiences alongside memories and stresses that her own approach is not a formula for others. Therapy and other support have helped her work toward being present for Rosie, 11, and Peter, 8.
For Poppy’s Feb. 3 birthday, the family hangs photographs around the mantel, makes cake pops and lights a candle. On the anniversary of her death, they take time off work and school and return to the town where they were last together as a family, often visiting parks and riding electric scooters by the river. Massey says the traditions do not make the days less painful but help the family honor Poppy and keep her memory present.
