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THE mom of a Highland schoolgirl who died following a battle with a rare and incurable disease shared her grief.

Blainie White, 12, of Kiltarlity, near Inverness, died suddenly at his home on September 20 after a long battle with Batten disease.


Blainie White, 12, has died after a long battle with the diseaseCredit: Facebook

The young girl was diagnosed with the disease at the age of four, when she started tripping while running, before she became a fall while trying to walk.

As she battled the disease, her condition gradually deteriorated, her vision and speech becoming impaired as her motor skills were affected.

Confirming the tragic news on Facebook, mom Valerie Adamson said she was “really broken”.

She wrote: “Absolutely devastated, heartbroken words just cannot describe how we are feeling right now.

“My beautiful, inspiring, strong and fiery little girl! You have shown me what strength and unconditional love is and to smile despite everything no matter what!”

“Sadly, Blainie passed away peacefully on Monday morning surrounded by all those who loved her so dearly.”

“Life will never be the same again, a void that will never be filled again.

“You had your own path which was very different from anything I could have wished for and desired for you.

“I was blessed that you chose me to be your mom and I will love you forever with all my heart, my beautiful girl!”

“Go ahead and be free at last, my little bee.”

More tributes were paid to Blainie online, with a friend writing: “Biggest smile and best laugh ever.

“I loved working with Blainie and getting to know her while working with her in school.

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

Scott White, Blainie’s father, ran the Loch Ness Marathon in 2017 to raise funds and raise awareness for the Batten Disease Family Association (BDFA).

Mourners were encouraged to wear bright colors at Blainie’s funeral, where donations will be collected for the BDFA.

What is Batten disease?

Latte disease, otherwise known as neuronal ceroid lipofuscinosis, is a fatal disease that affects the nervous system.

The condition, which usually begins in childhood, can manifest as vision problems and seizures.

It can then worsen, children suffering from cognitive impairment, worsening of the seizures and a progressive loss of sight and motor skills.

It is often fatal in the late teens or early twenties.

According to BDFA UK, around 1 in 3 children are diagnosed with an infantile form of the disease each year, which means there are likely between 15 and 30 children affected in the UK.

There are other variants of the genetic disease, with 14 strains diagnosed to date.

There is currently no cure

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