2-Year-Old Twin Boys Die despite Attempts to Save Them from Rare Affliction – Mom Calls Loss 'Pure Torture'

A United Kingdom mother of twins barely had time to enjoy her toddlers when one died, followed by the other within weeks of each other. The children's grandmother said they knew the boys were dying after being diagnosed but wished they had more time with them.

A woman named Nicola Minshall, 35, created a Facebook group to share her twin sons Lucas and Aiden Pickerill's journey with NRROS gene mutation. On November 12, 2023, she gave some insight into the children's struggles, revealing how fluid-filled sacs were discovered in the twins's brains when she was 32 weeks pregnant with them.

At the time, medical professionals told the expecting mother that the discovery's consequences would be uncertain. They would either be born happy and healthy, or they would need serious medical attention. Luckily, when the twins arrived, they were normal, healthy children who did all the average things expected of them.

The pair played, laughed, talked, sat up, and fed themselves, so their parents prayed that the sacs found in their brains would amount to nothing. Sadly, when the boys turned nine months old, they started having what she called "febrile" seizures.

The seizures only happened when the children were sick, but from 18 months, Lucas began having them daily. Aiden followed in his brother's footsteps, but his seizures were always two weeks behind the other twin, with Nicola stating:

"They then began to loose (sic) everything they could once do and are currently like newborns again."

The parent from the United Kingdom revealed that she and her partner, Adam Pickerill, tried all sorts of medicine, but nothing stopped the seizures. They were advised to do genetics tests, and they did, with the results leaving their world turned upside down. The tests confirmed the boys had a very rare NRROS (Negative regulator of reactive oxygen species) gene mutation, with their diagnosis being made on October 27, 2023, at Royal Stoke Hospital.

Nicola and her partner were devastated by the news. They had never wished to hear something like this about their boys and weren't prepared to absorb it. Sadly, on January 27, 2024, the woman was back with a heartbreaking update about her sons on the Facebook group she created, saying:

"Both our beautiful boys sadly lost the battle."

The mother in mourning urged others to do genetics tests as soon as they can because the results can give answers that can save lives or maybe reveal nothing. The grieving parent feels it's better to know so people can prepare themselves if the results aren't good.

Anne felt like a switch had been turned on abruptly to end the boy's life.

She said she wished they'd done genetics tests with their late children because if done sooner, they would not have lived for months on false hope. The tests also allow people to get the proper medication that improves their quality of life.

Unfortunately for her twins, who were two when they passed, there isn't enough research about their condition. If more people do genetics tests, it can help shed some light on rare conditions like the one her boys suffered from. Nicola believes more tests can hopefully lead to a cure being found so families won't have to go through "this pure pure (sic) torture, living nightmare."

On the same day that Nicola put up her post, her mother, Anne Minshall, wrote her own Facebook post mourning the children's deaths. The grandparent sadly noted how "life is so so (sic) cruel" before revealing that Aiden went to join his brother the previous morning.

She explained how they knew after getting the boys' diagnosis that their deaths were inevitable, but they still hoped to have more time with Aiden. The twins saw Aiden being six weeks behind his brother in his progression with the illness. Anne felt like a switch had been turned on abruptly to end the boy's life.

The grandmother said Nicola, her partner, and the rest of the family didn't deserve what happened to them. She noted that if love could've kept the boys alive, the children would've broken "all records living well into their billions."

Lucas passed away on December 14, 2023, and his brother followed on January 26, 2024, at The Donna Louise Children's Hospice in Stoke-on-Trent. Nicola described her late children as "the most amazing, cheeky little boys."

She revealed that they were always smiling and everyone who knew them loved them. The parent confessed that she'll miss them greatly. Vickye Durber, a family friend, tried to assist Nicola and her partner with their loss by creating a GoFundMe page to help them with burial costs.

The funds were initially meant to help with Lucas' funeral costs but were updated when Aiden lost his life, too. Vickye's fundraising goal was £2,000 ($2,550), but 171 people have already broken the goal by raising £3,375 ($4,310) in donations.

Only 13 cases of NRROS have been reported worldwide. A study about the disease was released in February 2020. The illness mainly affects the developmental skills of young children, starting from around 18 months old. Shockingly, children who have it lose the knowledge they've learned, like walking, talking, eating, and sitting upright, within a few months.

If you want to be cheered up after reading that heartbreaking story, click here to read about a woman who prayed for her twin girls after doctors said saving them would be a "waste of time."