A MUM has described going through “pure torture” after her “beautiful” twin boys passed away six weeks apart.
Two-year-old Lucas and Aiden Pickerill lost their lives to a developmental condition so rare they were the only people in the UK to have it.
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And only 13 cases have been reported across the globe so far.
Called negative regulator of reactive oxygen species (NRROS), Lucas and Aiden were diagnosed with the extremely rare gene mutation that caused them to regress to newborns just three months ago.
Tragically, Lucas lost his fight for life on December 14 last year and Aiden passed away on January 26, 2024, at The Donna Louise Children’s Hospice in Stoke-on-Trent.
Mum Nicola Minshall, 35, described losing her two little boys to the unknown condition as “pure torture” and “a living nightmare”.
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She said: “They were the most amazing, cheeky little boys.
“They were always smiling and loved by everyone who knew them. They will obviously be greatly missed.”
Updating followers on a fundraising page, family friend Vickye Durber said: “No parent can ever plan for the loss of a child and I can’t even begin to imagine the pain of losing two.
“It is with a very heavy heart I share the devastating news that Aiden has also lost his battle to NRROS only a short time after his twin brother Lucas lost his battle.
“Please donate to help this lovely, amazing family have the time they need to process this devastating news and grieve their twin boys without having to worry.”
The brothers were developing healthily until they started showing symptoms last year.
They began having seizures and were diagnosed at Royal Stoke Hospital on October 27.
World ‘turned upside down’
Nicola said her world was “turned upside down” and she had to provide constant care for the boys who became like “newborn babies” again.
NRROS was only discovered in 2020. It mainly affects the developmental skills of young children, starting from around 18 months old.
Children will lose basic skills they have learnt such as talking, walking, sitting up and eating for themselves within just a few short months.
Nicola, of Madeley, Staffs, said previously: “They spotted cysts on the brain at 32 weeks but they informed me it could be nothing at all or learning difficulties.
“They were doing things like normal children do, they were walking and talking.
“They fed themselves, they laughed. They were feeding, talking, crawling. Sitting up. They very nearly started walking.
“At 18 months Lucas started having seizures daily. Then Aiden started having them three weeks behind.
“He did his last smile on Christmas Day, then after that they stopped moving and sitting up. Within a month we lost everything. We’re full time carers now.
“They said it seemed strange that they were both going the same way. We did the genetics, then that’s when it came back NRROS.
“They say it’s a low life expectancy. It’s the regression of things they’ve once learnt. They lose things that they once did.
“There could be more people out there. Hopefully more research can do some good.”
What is NRROS?
NRROS is is a rare neurodegenerative condition that causes children to regress after reaching developmental milestones and experience drug resistant epilepsy.
Only 13 cases of the condition have been identified across the globe.
A 2022 study published to the European Journal of Epilepsy said children with the gene mutation tended to start displaying symptoms at around 12 months old.
Children will lose basic skills they have learnt such as talking, walking, sitting up and eating for themselves,
They’ll also experience seizures.
The condition was only identified in 2020.
NRROS caused the tots to have up to 10 seizures a day but a lack of research means there’s no dedicated medicine to tackle the symptoms.
Nicola and her family were fundraising to be able to pay for treatment, if it ever became available.
She added: “The doctors haven’t really got any answers, they haven’t come across it in the UK before.
“They’re basically losing everything they could once do.”
Now the family are raising funds to cover funeral costs.
No more families should endure this ‘living nightmare’
Nicola and dad Adam Pickerill are now calling on other parents to carry out genetic testing on their children.
Nicola said: “Both our beautiful boys sadly lost the battle.
“Please do genetics as soon as you can it may not give you the answers to save, help them but at least you will now what path your going on wont take the heartbreak away or make it any easier but you can prepare yourselves.
“We didn’t want to do genetics with the boys but I wish we did it sooner because we were living on false hope for months.
“Genetics have also helped so many get on the right medication and give them the best quality of life.
“Sadly for the boys the condition they had there’s very little research on at the moment.
“But if more people did do genetics it could help give answers to all these rare conditions too as more research would be put in and then hopefully a cure can be found so no family goes through this pure pure torture, living nightmare.”