Our daughter passed away at 15 months from a rare genetic disorder, we decided to compress her ashes into parting stones so we can still hold her

The couple from Idaho lost their daughter Poppy to the disease in April last year  READ MORE: I'm an alpha male dating a transgender woman - people say our love is wrong but I will never stop fighting for us

A young couple solidified their daughter’s ashes into parting stones after losing her to a rare genetic disorder in April last year.

Kaylee and Jake Massey, from Idaho, had their life flipped upside down when their daughter Poppy was diagnosed with Tubulin Folding Cofactor – or TBCD –  a severe genetic neurological condition,  at just nine months old.

The parents were unaware that Poppy had a rare illness until she was four months old when they noticed her vision wasn’t forming properly.

They went back and forth with doctors for months until receiving a conclusive diagnosis.

‘After doing the most advanced genetic tests on the market, we got the most horrific news to find out that she had a genetic disorder that I think at the time, she was the 38th child in the world diagnosed with,’ Kaylee told People.

Six months later, Poppy tragically passed away in the ICU. To remember Poppy, the Massey’s challenged the norm and transformed her remains into parting stones.

Jake and Kaylee (both are pictured above) decided to compress their daughter’s ashes into parting stones

At the time of Poppy’s birth, the parents were clueless that their little girl was born with one of the rarest genetic orders.

It wasn’t until she was four months old that Kaylee and Jake, who have two other children together, Rosie, eight, and Peter, six, noticed that Poppy was having difficulty with her vision.

The parents took her to the hospital, where an MRI scan found that the centre of Poppy’s brain had scarcely formed.

She was diagnosed with several conditions before medical professionals landed on TCBD – a disorder caused by a genetic mutation on both alleles of the TCBD gene.

The parents remained positive that Poppy would have a few years left with them. In an explanatory TikTok on Poppy’s condition, Kaylee explained: ‘The average life span of kids that have a disorder like this is about three to five years.’

However, after receiving the diagnosis, Poppy appeared to suffer from breathing difficulties.

She tested positive for a respiratory infection, and doctors also found pneumonia in her lungs.

The parents remained optimistic, but when Poppy was admitted to an ICU for the infection, her heart stopped.

Poppy (pictured with Kaylee) was diagnosed with TBCD, a rare genetic disorder, at nine months old

Poppy’s parents were unaware that she had a rare genetic disorder for the first few months of her life

The family had five hours left to say goodbye to Poppy until she tragically passed away.

Jake and Kaylee decided to remember Poppy unconventionally.

The family wanted to keep Poppy close, but Jake and Kaylee worried their children might break the urn or fear its presence.

They settled on passing stones to prioritize Rosie and Peter and what they would be most comfortable with.

However, when they received the box, the level of care put into Poppy’s stones exceeded the family’s expectations.

‘It felt so personal, and I remember opening that card and just feeling like these people cared about my daughter,’ Kaylee said.

Kaylee has since taken to TikTok to share insight into the family’s grieving process and special memories of Poppy.

Kaylee and Jake took to the platform to explain their decision to choose parting stones.

‘I just want to start off by saying, when you sit down at a funeral home and they present the options in front of you, every option is bad,’ Kaylee said.

‘We chose to cremate her and one step beyond that, we chose to have this company called Parting Stones to have her ashes turned into rocks, and the reason for that was because… it was the least bad option,’ Jake said.

‘It seemed very touchable and tangible, and having two other kids in our home, we never wanted to have something fearful of breaking,’ he continued.

‘It feels like we retain the ability to hold her a little bit and keep her with us, and if we want to spread her ashes somewhere later in life, we can still do that.’

Social media users took to the comment section to share their thoughts and offer support to the family

The parents then continued to take out Poppy’s stones, which are all different sizes with yellow specks.

‘I think they’re beautiful,’ Jake concluded.

Viewers took to the comment section to share their thoughts on Kaylee and Jake’s decision.

One said: ‘What a beautiful way to hold earthly space for Poppy.’

A second added: ‘What an emotional experience to ‘hold’ Poppy in a new form. The stones are beautiful. Always thinking about you guys.’

A third wrote: ‘What ever option you chose is the correct one because it was right for YOU. I’m sorry for your loss.’

A fourth added: ‘Like a worry stone. Carry with you & rub when you seek comfort. Many worry stones even have angels inside of them. Yours truly does contain an Angel.’