Family's 'pure torture' as twin boys die six weeks apart from rare condition
A bereaved mother has described her "pure torture" after losing her "beautiful" twin boys just six weeks apart.
Heartbroken Nicola Minshall and Adam Pickerill have spoken out about the loss of their sons, Lucas and Aiden. The two-year-olds were diagnosed with an extremely rare genetic condition which caused them to regress to a newborn baby. The disorder is so rare, only 13 cases have been reported in the world since it was discovered in 2020, and it resulted in the otherwise healthy toddlers to suffer from daily seizures from just 18 months old.
Doctors diagnosed Lucas and Aiden with NRROS at Royal Stoke Hospital in October after fluid-filled sacs could be seen on both their brains while Nicola was still pregnant. Children with NRROS - which stands for Negative Regulator of Reactive Oxygen Species - experience severe epilepsy and lose crucial developmental skills like sitting up and speaking. By November last year, Nicola said the boys had regressed to the same skills as a newborn baby.
Tragically, Lucas died of the illness on December 14, before Aiden also passed away last Friday at The Donna Louise Children's Hospice in Stoke-on-Trent, Staffordshire. Now Nicola and Adam are urging parents to get their children's genetics tested after having described the torture of their sons' diagnoses and illnesses.
Aiden & Lucas Pickerill with parents Adam & Nicola (Nicola Minshall / SWNS)
The family with sister Josie (Nicola Minshall / SWNS)Speaking on Wednesday, Nicola, 35, 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."
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She added: "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."
Recounting the boys' diagnosis, Nicola said: "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. From the age of nine months, they started having seizures, but only when they were ill.
Nicola said the boys' illnesses was 'pure torture'"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."
When medication did not work, the twins were examined for genetic disorders and they received the NRROS diagnosis. Nicola, from Madeley, Staffordshire, said that very little is still known about the disorder with mortality rates high. She has also set up a Facebook group in a bid to raise awareness, while friend Vickye Durber set up a GoFundMe page to support the family. To donate to the fund-raiser, click here.
Updating the page, Vicky wrote: "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."
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