My two-year-old daughter is dying of dementia – I lose a piece of her every day

April 6, 2019 15:15

A HEARTBROKEN single mum has told how her two-year-old daughter is being “stolen” from her “piece-by-piece” after developing dementia aged ONE.

Vicky Cunningham's girl Mirryn was born at 31 weeks and two days, weighing a tiny 3lb 2oz.

But despite her rocky start, which saw her stay in hospital for two months in a special care unit where she was treated for jaundice, she thrived and grew into a healthy baby.

Vicky, 34, from West Lothian, Scotland, told Fabulous Digital: "She was developing normally. She would gurgle and smile. She was really lovely and had a cheeky personality developing.”

However, at around 10 months, Vicky realised something was wrong.

She said: “She was no longer gripping properly. She seemed to be weakening in general and I just instinctively knew something was not right.”

Vicky took her to health visitors where she was referred to St John’s Hospital.

It was, for Vicky, the start of a journey which culminated in a terrible diagnosis in January this year - CLN1 Batten disease, otherwise known as childhood dementia.

It is an incredibly rare illness where cells are unable to regenerate.

Children gradually lose the skills they’ve learnt as their brains disintegrate.

Vicky said: “It’s heartbreaking to see. She should be starting nursery but I know it will never happen. There’s so much she will be missing.”

Vicky said she realised there was something wrong with her girl from an early age.

“Whereas as a very small baby she was normal she never tried to hold my hand when she got older,” she said.

“She didn’t want to grab things – it was like she was losing her motor skills.”

At around a year old, following her mum’s requests, Mirryn was sent for an MRI of her brain – a deep scan of the tissue.

It showed some decline in the myelin in the brain, the fatty substance formed in the central nervous system, but not enough for the doctors to be hugely concerned.

She was sent home with a diagnosis of myelination, when the sheath comes off the myelin, which is the insulating layer that forms around the brain's wiring.

Vicky said: “But she just got worse and worse. In November last year she would rock about in her baby bouncer which she loved.

“A few weeks later she was physically unable to do it. Her babbles started to go… she was declining at an alarming rate.”

Another MRI scan was carried out and it showed huge changes – with virtually half her brain eaten away.

“Even a child would have noticed how much her brain had changed,” admitted Vicky.

“Her brother Alexander, who is eight, could have taken one look at the scan and realised it wasn’t right.”

She was diagnosed with Batten's Disease and put under the care of a team of specialists including a number at Great Ormond Street Children's Hospital.

The rarity of the illness means there is not an awful lot known about it - and at present there is no treatment. And since then she has got worse by the day.

“It’s devastating to watch,” said Vicky, who is her daughter's full-time carer. “She has lost eye contact, can’t interact, her vision is going and she can’t swallow.

“She is so different to the happy girl she used to be. I never would have imagined this could happen. It’s not an inherited form of the disease – it’s just bad luck.”

Vicky admitted her girl could die any day.

“It could be today, it could be tomorrow, it could be in six weeks,” she said. “I don’t think she will be here by Christmas sadly."

She added: “Like an elderly person with dementia she will stop breathing in the end.

“You think of it as an old person’s illness and it usually is, but sadly not in this case.

“It’s taking my little girl, piece by piece.”

The condition prevents Mirryn's dream of going to Disneyland so Vicky is looking to arrange a Disney party at home.

She has launched a crowdfunding campaign at gofundme.com to raise cash for a 'P Pod' - a chair which helps to protect her daughter's "floppy" posture.

She added: "She would love to go to Disneyland but cannot fly, so instead we are arranging a special Disney party with costume characters and a Snow White cake right here at home, later in the summer, for everyone to look forward to."

She continued: "However, this appeal is actually to raise money for a special seat called a P Pod which protects her posture while she is lying in it.

"Mirryn is completely floppy and unable to support herself and needs this chair to help her find a suitable position to allow her to breathe and be at ease.”

“Children with Batten Disease usually show symptoms earlier than age one,” the US' National Institute of Neurological Disorders and Stroke said.

“Common symptoms for most of the forms include vision loss, seizures, delay and eventual loss of skills previously acquired, dementia, and abnormal movements.”