Twins experience 10 seizures a day due to rare condition just 13 people in the world have

‘They still have ten seizures a day’ (Picture: Nicola Minshall / SWNS)

A set of twins have been diagnosed with a condition so rare that it’s only ever affected 13 people around the world.

Lucas and Aiden Pickerill are battling developmental condition NRROS (Negative Regulator of Reactive Oxygen Species) and are the only people in the UK to have this diagnosis.

The brothers first started showing symptoms in December last year, aged 18 months, when they began having seizures.

This is when their mum Nicola Minshall, 35, says the family’s world was turned ‘upside down’. Since then, the condition has caused them to go from talking and crawling toddlers to now behaving like ‘newborn babies again’.

‘Within a month we lost everything'(Picture: Nicola Minshall / SWNS)
The pair have regressed from active toddlers to more like newborns (Picture: Nicola Minshall / SWNS)

Due to how rare the condition is, the twins – now aged two-and-a-half – were only officially diagnosed at Royal Stoke Hospital in October 2023.

Mum-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.’

Before their diagnosis (Picture: Nicola Minshall / SWNS)
‘Doctors haven’t come across it in the UK before’ (Picture: Nicola Minshall / SWNS)

Nicola adds that she and her family are now full-time carers for the boys.

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.

Now the family are fundraising via GoFundMe 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 [doctors] 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.

‘They still have ten 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.

‘We’ve got nothing to lose, we have to try anything we can.’

‘It will relieve some financial stress off the family for any treatment they may have to pay for or even research’ (Picture: Nicola Minshall / SWNS)

Nicola adds the fundraiser will help take the financial burden off the family when treatment is available – either in the UK or abroad.

She said: ‘I have set this fundraiser up in the hope it will relieve some financial stress off the family for any treatment they may have to pay for or even research.

‘Also to give them something extra to make memories with all three children without the financial stress they may feel.

‘These boys and this family deserve to have happiness and hopefully by giving a small donation you’ll help this happen.’

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