The parents of a 15-month-old baby who sadly passed away from a rare genetic disorder have revealed they have decided to turn her ashes into stones.
Kaylee and Jake Massey - who go by the handle @Poppy&Kaylee on TikTok - revealed on the video-sharing platform that their late daughter Poppy was diagnosed at nine months with TBCD, a neurodegenerative disorder.
The disorder is extremely rare, with fewer than 50 identified patients in the world. It is caused by a recessive mutation on both alleles of the TBCD gene, and most children lose all movement by the age of four, and the majority do not live to see their fifth birthday, according to the TBCD Foundation.
Poppy was admitted to the hospital a few days before her death in April 2023. Doctors found spots of pneumonia in her lungs and tested her for a respiratory infection.
Initially, the Masseys didn't expect this hospital visit to be their final one as they told People: "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 three to five years old. We were blindsided that her body couldn't take it anymore," Kaylee added.
The next morning Poppy needed to be moved to the ICU, and that's when her heart stopped. The parents called their two other children, Rosie, eight, and Peter, six, to say goodbye to their baby sister.
"That was probably around 6:00AM when she coded, and so we had about five hours with her. We called our parents, who were watching our other two children, and they were able to come and say their goodbyes," she shared. "We felt it was very important to have Rosie and Peter there to say goodbye... we had to tell them, 'Your sister's going to die today.'"
After their beloved daughter passed away, the couple shared the heartbreaking announcement on TikTok.
Kaylee emotionally said in the clip: "We are home from the hospital, but not with our Poppy girl. Poppy passed away yesterday, but her body is now perfect. She can now move her arms and roll her eyes at me. She’s dancing up and down, watching down on us.
"There [were] a lot of hard moments in those last 24 hours," she added. "I know her soul is in heaven but I just loved her physical body. It was so cute...We will be living the rest of our lives, just missing her."
The couple decided to honor their little girl's life in a special way by cremating her body and turning her into 'parting stones' to keep at home. They opted for stones as they felt an urn would bring a "fearful" and uncomfortable presence in their home with two kids.
After deciding on cremation, the family received a "beautiful box" complete with a handwritten note that said: "Thank you for entrusting us with your daughter. It's been an honor to have her in our care."
"It felt so personal, and I remember opening that card and just feeling like these people cared about my daughter," Kaylee told the outlet. "We continued to open up these little bags that had the stones in them, and I remember initially, the stones were so beautiful.
"They're white with little specks of yellow in them, and they say that they don't do anything to the ashes. I don't know what the little specks of yellow are, but they feel like such a little special gift," she added.
The family keeps the stones in Poppy's swing as "that's where she would be if she were in our home and if she wasn't in our arms," and shared that they leave their late daughter's belongings out so they may "have reminders of the joy that she was in our lives".
"We don't want them to think that her toys cause us sadness, we want her toys to cause us joy," Kaylee said. "And so our kids play with her basket of toys, or they'll move around her bassinet crib to help create their fort and we're like, 'Oh, Poppy's helping you guys out today.' One day I might put them away, but my heart is absolutely not ready yet."