Twins, 2, fight for their lives with condition only 13 people have in the world

27 November 2023 , 12:45

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Aiden and Lucas Pickerill have been diagnosed with a rare condition

A mum's world has been turned upside down after her twin toddlers were diagnosed with an extremely rare genetic condition which has caused them to regress to newborns.

Lucas and Aiden Pickerill, aged two-and-a-half, were diagnosed with NRROS at the Royal Stoke hospital last month. Children with the disorder experience severe epilepsy and begin to lose developmental skills they have already learnt, such as sitting up, reaching for their mouths and speaking. 

The boys started to have seizures every day from 18 months old. Now, a year later, mum Nicola Minshall said her boys have regressed to the point they are like newborn babies.

The boys started to have seizures every day from 18 months old

Nicola, aged 35, said: "At 32 weeks pregnant medics could see fluid filled sacs on both their brains. We were told it could be something or it could be nothing. 

"The boys were born and they were completely normal, healthy babies. They played, sat up, talked, laughed, fed themselves and did everything a normal child would do."

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"From the age of nine months, they started having seizures, but only when they were ill. From 18 months, Lucas started having seizures every day; Aiden followed the same pattern, but was two weeks behind. 

"They could both sit up, but now neither of them can. Both are like newborns - they can't do anything for themselves. They wake up, eat and go back to sleep."

Nicola has set up a Facebook group in a bid to raise awareness.

When medication did not work, the twins were examined for genetic disorders and they received the NRROS (Negative Regulator of Reactive Oxygen Species) diagnosis. Nicola, from Madeley, understands it is a recently discovered condition and there are only 13 known cases worldwide. Little is known about disorder and the mortality rate remains high, with more research needed into possible treatments.

Nicola has set up a Facebook group in a bid to raise awareness. A friend has set up a GoFundMe page to support the family so they can afford potential treatment and make special memories together. To donate to the fund-raiser, click here.

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Rachel Alexander