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Heartbroken Highland mum pays tribute to ‘the most beautiful, sweetest girl’ after 12-year-old Blainie dies following battle with rare disease

Blainie White, 12, first started showing symptoms of Batten Disease at the age of four. Pictures by Valerie Adamson

Tributes have been paid to a Highland schoolgirl after she died following a battle with a rare, incurable disease.

Blainie White, 12, first started showing symptoms of Batten Disease at the age of four.

Her condition steadily deteriorated with her vision and speech becoming impaired and her motor skills becoming affected.

Blainie passed away on September 20 at home in Kiltarlity, west of Inverness.

Her heartbroken mum Valerie Adamson said despite regularly suffering through pain and seizures, Blainie still “smiled her big smile every day”.

Valerie said: “We are still truly broken. Without her, life is so strange but we smile like she always did.

“Blainie was the most beautiful, sweetest little girl. Her big grey eyes and huge smile captured everyone’s hearts.”

‘This amazing girl still found the energy to smile and be happy’

Blainie loved to dance, play and terrorise her brother Kion in her early years before her illness started to rob her of everything.

She was besotted by her little sister Kaia.

The first sign of her condition happened at age four when she began tripping while running.

That progressed to falling while walking and she was given her diagnosis after a year-long wait for answers.

Blainie loved dancing and terrorising her older brother before her condition slowly changed her life. Picture by Valerie Adamson

Blainie’s mum said: “Batten’s robs a child of everything. Step by step, they start losing their mobility.

“Soon they start losing interest in everything in life.

“You have to watch your once healthy child slowly wasting away in pain and distress every day of their life.

“Yet somehow this amazing girl still found the energy to smile and be happy.

“It brings some comfort to know that her passing means she will no longer be in pain but will be deeply sadly missed and has left a void that could never be filled.”

‘The biggest smile and the best laugh ever’

Tributes have also paid online to Blainie, with many recalling happy memories with her at Drummond School in Inverness.

One said: “The biggest smile and the best laugh ever. Loved working with and getting to know Blainie whilst working with her at school.

“She loved absolute nonsense. A beautiful soul and she will be sadly missed.”

Blainie’s funeral will be held on October 4.

Blainie’s dad, Scott White, ran the Loch Ness marathon in 2017 to raise money and awareness of the Batten Disease Family Association (BDFA).

It had been a pillar of support for the family since her diagnosis.

Medics have only come to understand the condition since the genes causing it were identified in 1995.

What is Batten Disease?

The BDFA estimate that there are only around 100 to 150 children, young people and adults currently living with the condition in the UK.

Blainie suffered from an even rarer form of Batten CLN6, which currently has no treatment or cure.

BLAINIE WHITE 29.10.2008 – 20.09.2021Suddenly and sadly but peacefully at home surrounded by her loving family on…

Posted by William T. Fraser & Son on Monday, 27 September 2021

There are various differences in terms of the progression of the disease but there are a number of shared symptoms.

Some of these include an increasing visual impairment, complex epilepsy with severe seizures and the decline of speech, language and swallowing skills.

Blainie’s funeral will be held on October 4 in Inverness.

Mourners are encouraged to wear bright colours and donations will be taken for the BDFA.