Blainie White, 12, died after a long battle with Battens Disease at her home in the Scottish Highland village of Kiltarlity this month
A heartbroken mum has been “left with a void that can never be filled” after her daughter passed away from a rare, incurable disease.
Blainie White, 12, died after a long battle with Battens Disease at her home in the Scottish Highland village of Kiltarlity this month.
The rare condition is thought to affect only 1 in 12,500 people in the UK and affects the nervous system, causing seizures, visual impairment, mobility loss and early death.
Most children with the disease tragically die between six and 12 years, the Daily Record reports.
Her mother, Valerie, said despite her condition leaving her wheelchair-bound and blind by the end of her life, Blainie always had a smile on her face.
Valerie said: “Blainie was the happiest child smiled every day despite her condition and the toll it took on her, she had the most infectious laugh and absolutely adored silliness and nonsense.
“Blainie had Batten’s Disease which has a variety of different forms or cln’s her particular type was cln6 sadly a rarer form of the disease, and no treatment or cure for this.
“Battens disease is a life limiting neurodegeneretive disease and ultimately it is a problem with cell functions and the ability to use, store and waste protein and lipids in the cells so they cannot function properly- for Blainie she was born as what appeared healthy and met each milestone up until she was around four years old where she then started showing symptoms.”
Blaine began displaying symptoms before she was taken to medics before the condition began “robbing her of everything”.
Her mum added: “(She was) simply falling when running then walking and very quickly she soon became dependent on a wheelchair to get around her sight gradually got worse and ultimately she lost her sight by age 10, her motor skills and speech followed and she required to a PEG for feeding and meds.
“Seizures started for Blainie subtly when she was around six and at first these weren’t too much of a bother but they became worse and very difficult to control despite numerous different medications the frequency and severity of seizures always took over.
“Battens robs a child on everything step by step they fist start losing their mobility not just making the child immobile the disease causes muscle stiffness and joint tightness which causes them great pain and discomfort then speech and eating seizures, soon they slowly start having dementia like symptoms they start to lose interest in everything in life and rely on everyone to provide them with the most basic tasks.
“You have to watch your once healthy child slowly wasting away in pain and distress everyday of their life’s yet somehow this amazing girl still found the energy to smile and be happy.”
Valerie paid tribute to her little girl and said she was her “strength and inspiration”, adding: “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.”
Friends and family also paid tribute to Blainie, with one writing: “She lit up all our lives with her beautiful laugh and smile. Rest in peace darling girl.”
Another person added: “Absolutely heartbroken to hear this. Blainie was such a beautiful wee soul with brightest smile and heartfelt giggles.”