At just 15 months old, Poppy Massey passed away from TBCD – a genetic disorder that impacts the brain, spinal cord, and frequently other areas of the body. And this left her heartbroken parents completely blindsided.
At just 15 months old, Poppy Massey passed away from TBCD – a genetic disorder that impacts the brain, spinal cord, and frequently other areas of the body. And this left her heartbroken parents completely blindsided.
In a world often marred by sorrow, Kaylee and Jake Massey found themselves navigating the depths of grief. Heartache struck when their beloved daughter, Poppy, departed this world at the tender age of 15 months.
“We were blindsided that her body couldn’t take it anymore,” Kaylee recalled.
Poppy’s story began with the innocence of a perfect newborn. However, it evolved into a narrative of resilience as her parents discovered the challenges ahead.
TBCD, a Devastating Diagnosis
At four months old, Kaylee noticed that something didn’t seem right with Poppy’s eyes. That first initial appointment led to devastating news.
“When she was 5 months old is when we finally got that, and the MRI showed that the center part of her brain, the corpus callosum, hadn’t developed properly, if at all,” Kaylee said.
From that moment on, uncertainty clouded the dreams they had for Poppy. At 9 months, the diagnosis of TBCD unveiled a path untraveled. It was a journey fraught with uncertainties and medical complexities. Poppy became only the 38th child in the world diagnosed with TCBD.
Amidst the storm of diagnoses and medical revelations, the Masseys clung to hope. They continued nurturing their precious Poppy through each hurdle. As the family faced a respiratory infection leading to Poppy’s hospitalization, they encountered the unexpected news that would forever alter their lives.
“I was just panicky because I felt like Poppy couldn’t breathe, and we were so heightened with Poppy,” she recalls.
Despite the diagnosis of pneumonia in Poppy’s lungs and a positive test for a respiratory infection, Kaylee and her husband did not anticipate the severity of this hospital stay.
“There have been other kiddos with this TBCD genetic condition that have had pneumonia and hospital stays, and they’re there for a week, and they go home. And so we had only heard from these other families that they get over it, and then they go home, and they live to be 3 to 5 years old. We were blindsided that her body couldn’t take it anymore,” Kaylee said.
The End of Poppy’s TBCD Battle
When doctors moved Poppy into the ICU, the baby girl’s eyes met her mother’s gaze, and a heart-wrenching reality unfolded. The atmosphere shifted as her tiny heart ceased its beating, prompting an urgent response from the medical team. Amid the chaotic scene, the charge nurse initiated CPR while frantic voices called for a code.
This heart-wrenching event unfolded early in the morning. It granted the Masseys approximately five precious hours with their beloved Poppy. In a poignant decision recognizing the importance of including their other children, Rosie and Peter, in this painful goodbye, the Masseys faced the agonizing task of explaining to the youngsters that their sister would not survive the day.
@poppy_and_kaylee Quick answer- her body went from small spots of pneumonia to only one of her lungs having maybe 25% function. Her seizures were so frequent and almost impossible to control. Leukodystrophys cause the body to not function like a healthy body. Her muscles, organs, and brain couldn’t recover or heal. #leukodystrophy #leukodystrophyawareness #tbcd #tbcdawareness ♬ original sound - Poppy&Kaylee
The decision to transform Poppy’s ashes into Parting Stones became a testament to the family’s desire for a gentle reminder of their sweet little girl in their home. Each stone, speckled with hues of white and yellow, became a cherished memento. In the mosaic of sorrow and grief, the Massey family finds solace that God cradled them in their darkest hour and understood the pain of losing a child. Through the pain, may the hope of a future reunion in heaven cradle them, where one day, their family will once again be whole.
“So with you: Now is your time of grief, but I will see you again, and you will rejoice, and no one will take away your joy,” John 16:22.
Photo Credit:: Facebook/Poppy and kaylee
Originally published on GodUpdates. Used with permission.
Originally published Thursday, 18 April 2024.
