The heartbreaking journey of Kaylee and Jake Massey in Idaho unfolded when their daughter, Poppy, was diagnosed with the rare genetic disorder TBCD at just 9 months old.
Despite a seemingly perfect start to parenthood, they noticed developmental issues in Poppy’s vision around 4 months. After a series of medical consultations and an MRI at 5 months, it was revealed that the central part of her brain, the corpus callosum, hadn’t properly developed.
Their quest for answers led them through multiple diagnoses, culminating in the discovery of the rare genetic disorder. To their surprise, geneticists were unfamiliar with this condition, making Poppy the 38th child globally to receive such a diagnosis at that time.
Tragically, a few days before Poppy’s demise, she was hospitalized for pneumonia during a family-wide respiratory illness. Despite the severity of the situation, Kaylee and Jake were taken aback by the sudden deterioration of Poppy’s health, as they had expected her to recover like other children with TBCD.
The unexpected turn led to a heartbreaking morning in the ICU, where Poppy experienced a cardiac event. The family cherished the remaining five hours with her, ensuring that Rosie and Peter, Poppy’s siblings, could bid their farewells.
Choosing to keep Poppy’s ashes at home, the Masseys sought an alternative to traditional urns. After discovering Parting Stones, a company offering stone-like alternatives, they found solace in the unique and nature-inspired option. The stones, received months later in a beautiful box with a heartfelt note, are stored in Poppy’s swing, symbolizing where she would be if still in their home.
Kaylee emphasized the personal touch in the company’s communication, expressing gratitude for entrusting them with Poppy’s memory. The stones, white with specks of yellow, remain displayed in their home, offering a nontraditional yet meaningful way to remember and eventually spread Poppy’s ashes in places that hold significance to the family.
The Massey family’s journey is a poignant tale of love, loss, and the unique ways individuals navigate grief and memorialization.
