At just 9 months old, Kaylee and Jake Massy’s daughter, Poppy, was diagnosed with a rare genetic disorder the parents had never heard of before. A disorder known as TBCD.
According to The TBCD Foundation, TBCD is “a rare genetic leukodystrophy caused by a recessive mutation on both alleles of the TBCD gene. While symptoms exist on a spectrum, it is often progressive with an average lifespan of about 4-5 years.”
@poppy_and_kaylee #tbcd #raregeneticdisorder #oneinabillion
♬ original sound – Poppy&Kaylee
Tragically, six months after being diagnosed with TBCD, Poppy passed away at the age of 15 months after she was admitted into the ICU with a respiratory infection. Now, her parents, Kaylee and Jake are sharing their daughter’s story and how they’ve honored her, with People.
After Poppy’s unexpected death, Kaylee and Jake learned of “Parting Stones.” Having always wanted to have Poppy’s ashes with them at home, they also knew they didn’t want an urn.
@poppy_and_kaylee After 3 months, our daughter is finally home. We share this to validate the hard decisions after death. #funeralhome #partingstones #childloss #childlossawareness
♬ original sound – Poppy&Kaylee
“Having two young kids at home, we did not want anything in our home that our kids would be fearful of, fearful of breaking, fearful of looking at, and we felt like an urn might have that presence in our home,” Kaylee explained.
Being a “nature family,” Parting Stones felt right for them in honoring Poppy.
“When she was born, we knew absolutely nothing,” Kaylee told People in an exclusive interview. “She was just perfect to us.”
@poppy_and_kaylee My heart, soul, life, everything has changed #childloss #griefjourney #leukodystrophy #tbcd
♬ orange juice bridge noah kahan – Camrie
And creating perfect little stones with her ashes “felt like the least bad option” for Kaylee, Jake, and their two other children. “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.”
“There’s 13 or 14 little stones. Her body was just so tiny and so of course there’s not going to be many stones, but I think that just broke me a little bit.”
As Kaylee explained, it was when Poppy was around 4 months old, that they “noticed that her vision wasn’t developing properly. And so after some doctor’s appointments and ophthalmologist appointments, it was decided that she needed an MRI on her brain.”
@poppy_and_kaylee We miss her #poppy #childlossawareness #griefjourney
♬ a thousand years (lullaby) – christina perri
Roughly a month after tests began, the “MRI showed that the center part of her brain, the corpus callosum, hadn’t developed properly, if at all.” But exactly what Poppy was dealing with wasn’t confirmed until they did the most advanced genetic tests on the market.
It was the genetic testing that gave Poppy, Kaylee, and Jake, “the most horrific news” finding out that Poppy “had a genetic disorder that I think at the time, she was the 38th child in the world diagnosed with.”
“The geneticists had never even heard of it before… I don’t think we realized what a severe diagnosis it was. We were just really naive in that,” Kaylee admitted to People.
Several months later, Poppy was admitted to the hospital with pneumonia. And although they knew the illness was more severe for Poppy, Kaylee knew “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.”
@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
Admittedly, Kaylee and Jake had no idea Poppy’s hospitalization was so serious. “We were blindsided that her body couldn’t take it anymore,” Kaylee admits.
Now, despite the heartbreak of losing a child and a sibling, the family still celebrates Poppy by keeping the stones out and many of Poppy’s things. “We as a family, we talk about Poppy all the time, and we talk about her in such a positive way. We keep everything bright and light and fun for our kids, and we encourage our kids to play with her toys.”
For Kaylee, it’s important that things that remind them of Poppy don’t make her two oldest children sad. “We want her toys to cause us joy. 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.”