Skip to main content

A heartbroken Scottish mother has been ‘left with a void that can never be filled’ after her young daughter died of a rare and incurable disease.

Blainie White was just 12 when she died after a long battle with Batten disease at her home in the Highland village of Kiltarlity this month.

This rare condition is thought to affect just one in 12,500 people in the UK and affects the nervous system, causing seizures, visual impairment, loss of mobility and premature death.

Most children with the disease tragically die between the ages of six and 12.



Tributes have been paid following the death of Blainie White

Mum Valerie told the Record how her daughter’s condition left her in a wheelchair and blind at the end of her life.

But she added that despite his obstacles, Blainie always had a smile on his face.

Valerie said: “Blainie was the happiest child who smiled every day despite her condition and the consequences it caused her, she had the most infectious laugh and absolutely loved being stupid and nonsense.

“Blainie had Batten’s disease which has a variety of different forms or his particular type was cln6 unfortunately a rarer form of the disease, and no treatment or cure for it.

“Battens disease is a life-limiting neurodegenerative disease and ultimately it is a problem with cellular functions and the ability to use, store and waste proteins and lipids in cells so that ‘they couldn’t function properly – for Blainie, she was born as what seemed healthy and met every stage until about the age of four, when she then began to show symptoms.’



Blainie went undiagnosed for the first few years of her life

Blaine started showing symptoms before his worried family rushed him to the doctor before the disease began to ‘take everything away from him’.

Valerie added: “(She was falling) just running and then walking and very quickly she quickly became dependent on a wheelchair to get around, her sight gradually got worse and eventually she lost her sight at the At age 10, her motor and speech skills followed and she needed PEG for food and medication.

“The seizures started subtly for Blainie around the age of six and at first they weren’t too bothersome but got worse and very difficult to control despite many different medications, frequency and severity of the seizures. have always taken over.

“Slats rob a child on everything, step by step, they begin to lose mobility, not only make the child immobile, the disease causes muscle stiffness and tightness in the joints, which causes them great pain and pain. discomfort, then slurred speech and eating, soon they slowly begin to have dementia as symptoms, they begin to lose interest in everything in life and rely on everyone to provide them with the most basic tasks.



Blainie was a happy kid

“You have to watch your once healthy child slowly wither away in pain and distress every day of her life, but somehow this amazing girl has always found the energy to smile and smile. to be happy.

“Blainie was my strength and my inspiration and always will be, I wish so much for her and if I could take anything for her I would.

“It brings some comfort to know that her passing means she will suffer no more but will be deeply missed and left behind a void that can never be filled.”



RIP Blainie

Touching tributes have since been paid to Blainie online who has siblings Kion and Kaia.

One wrote: “She lit up all of our lives with her beautiful laugh and smile. Rest in peace darling.”

Another person added: “Absolutely heartbroken to hear this. Blainie was such a beautiful little soul with a bright smile and genuine laughter.”

For more information about the disease or to donate to the Battens Disease Family Association, please click here.