Tragic twins die just six weeks apart after being diagnosed with ultra-rare condition

A pair of toddlers lost their lives to a cruel genetic condition just six weeks apart. Tragic twins Lucas and Aiden Pickerill, both aged 2, were battling NRROS (Negative Regulator of Reactive Oxygen Species) which caused them to regress to newborns.

The developmental condition is so rare the boy were the only people in the UK to have it and there's been just 13 cases ever reported across the globe. Tragically, Lucas lost his fight for life on December 14 and Aiden passed away last Friday (January 26) at The Donna Louise Children's Hospice in Stoke-on-Trent.

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 first started showing symptoms when they began having seizures and were diagnosed at Royal Stoke Hospital on 27 October. Mum Nicola Minshall, 35, 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 and 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, Staffordshire, previously explained: "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 (2022), 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.”

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.

Nicola 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. Our world tipped upside down."

To help the family with funeral costs and ongoing support visit the GoFundMe page.