A pair of two-year-old twins are fighting for their lives against an ultra-rare genetic disorder only 13 people in the world have ever been diagnosed with. Lucas and Aiden Pickerill are battling NRROS (Negative Regulator of Reactive Oxygen Species) which has caused them to regress to newborns.
The developmental condition is so rare the twins are the only people in the UK to have it and there’s been just 13 cases ever reported across the globe. 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 learned such as talking, walking, sitting up and eating for themselves within just a few short months.
The brothers first started showing symptoms in December last year when they began having seizures and diagnosed at Royal Stoke Hospital on October 27.
Mom Nicola Minshall, 35, says her world has ‘turned upside down’ and she now provides constant care for her boys who are like ‘newborn babies’ again.
Mom-of-three Nicola, of Madeley, Staffs., said: “They were only diagnosed about four weeks ago.
“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 is a bit more resilient. 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 thats when it came back NRROS.”
“It’s a gene mutilation. There’s 13 children worldwide who had it. We’ve managed to contact a woman in Texas whose son had it.
“She gave us some medication which she thinks helped her son”
“They say it’s a low life expectancy. It’s the regression of things they’ve once learned. They lose things that they once did.”
“There could be more people out there. Hopefully more research can do some good.”
NRROS causes 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 are fundraising to be able to pay for treatment when it’s made available, which will cover the costs of flights and medical bills.
Nicola added: “They haven’t really got any answers, they haven’t come across it in the UK before. The doctors are trying to stop the seizures, they’re on the ketogenic diet.”
“The body runs on fats and not carbs. We’ve had no end of epilepsy meds but they don’t do anything.
“They still have 10 seizures a day. They’re very much like newborns. They just lay there. They have both got tubes to top up their fluids because they’re not strong enough to eat. We’re their full time carers.”
“They’re basically losing everything they could once do. We can’t use the money yet, but when the treatment comes up we can use it to pay for treatment and research. I’m hoping and praying if something comes up abroad we can go straight away without worrying about money.”
“Basically all they’re trying to do is control the seizures. The doctors don’t know where to go. I think there’s only two or three others alive. There’s only 13 known cases known.”
“Past one there’s not much treatment to reverse it backwards. We want to find some sort of answers, why it’s going on.”
“Our world tipped upside down. We were hoping it was just severe epilepsy, we hoped they could come back. When we got the results, we knew they might not.”
“We know CBD oil has been helpful in quite a few cases but we’re waiting for the okays.
“We’ve got nothing to lose, we have to try anything we can.”
Produced in association with SWNS Talker
