'My world fell apart when my granddaughter died'

Nevaeh died last July after living with tubulinopathy

A woman has said her "world fell apart" when her six-year-old granddaughter died after living with a rare condition.

Nevaeh had tubulinopathy, a condition that causes brain malformations. She was born in 2018 and died at home in July 2024.

Claire said: "My world crumbled, because I was in the bedroom with Nevaeh. I was holding her hand.

"I'm there telling her, 'remember nana loves you', and I felt her heart beat for the last time. I was there waiting for it to beat again - but it didn't. I felt my world fall apart."

Nevaeh was born a twin in June 2018 at the Leicester Royal Infirmary. Claire said she could not take food or hold her head up, and four days after her birth, her weight had halved.

The hospital carried out blood tests as well as a magnetic resonance imaging (MRI) scan, and about four weeks later she was diagnosed with tubulinopathy, Claire said.

She said at the time of Navaeh's diagnosis, there were only about 100 or so known cases in the world.

The 58-year-old then became Nevaeh's full-time carer when she was six months old.

"It was hard, I volunteered, as I worked part-time and I was like 'yeah I can do this', but eventually Nevaeh's seizures got worse and I gave up my part-time job," Claire, from Melton Mowbray in Leicestershire, said.

Nevaeh had intensive care needs, was profoundly deaf, and although she could see slightly, she was registered blind.

Claire said managing those conditions were the "easy things" to take care of, compared to the seizures Nevaeh had on a daily basis which were "hard" to see.

She added Nevaeh's siblings lived with her parents, and they would all have "quality time" together.

'The best gift'

Claire said Nevaeh enjoyed sensory stimulation through music and physical touch.

"She loved sensory things, especially massages and she loved music therapy.

"Although she was deaf, Nevaeh would feel the vibrations. We used to play You're Welcome from [Disney film] Moana on repeat as we both loved it so much.

"We played that song at her funeral," Claire added.

Nevaeh died at home, which Claire said was "what I wanted, what our family wanted and I believe, what she wanted".

After her death, Nevaeh's mother bought a toy bear, with a recording of Nevaeh laughing inside it.

Claire said her granddaughter was an "absolute warrior" and "the best gift I could ever ask for".

Claire provided one-to-one care to Nevaeh

Claire said she and Nevaeh would go to the Loughborough-based Rainbows Hospice, from Monday to Friday each week.

"Looking after Nevaeh took all of my time, and Rainbows gave me a break so I could rest and sleep," Claire added.

Claire said eventually it was too much for the pair to go to Rainbows, but the hospice came to them through a hospice at home service.

"I honestly don't know how I would have managed without their incredible team. They helped us through the most difficult time of our lives," Claire said.

Claire added for six months, nurses came to see Nevaeh and assessed her palliative care needs, as well as making her as comfortable as she could be.

The hospice has now launched a summer fundraising appeal, saying it needs about £8.5m a year to run its services.

It supports more than 750 babies, children and young people living with life-limiting and life-threatening conditions, Rainbows added.

Claire described Nevaeh as an "absolute warrior"