Tragedy as twin two-year-old boys die six weeks apart after being diagnosed with rare genetic condition reported just 13 times around the world
- Lucas and Aiden Pickerill were diagnosed with NRROS three months ago
- There is currently very little research into the condition and no specific treatment
Two-year-old twin boys have tragically died just six weeks apart after being diagnosed with a rare genetic condition with only 13 cases reported worldwide.
Lucas and Aiden Pickerill, from Madeley, Staffordshire, were only diagnosed with the extremely rare NRROS gene mutation three months ago.
There is currently very little research into the condition and no specific treatment.
The toddlers had been developing as “perfectly normal and healthy” babies until December 2022, when they started having seizures.
Lucas died on December 14 and Aiden on January 26, both at the Donna Louise Children’s Hospice in Stoke-on-Trent.
Mother Nicola Minshall and Adam Pickerill are calling on other parents to carry out genetic testing as soon as possible.
Lucas and Aiden Pickerill were diagnosed with the extremely rare NRROS gene mutation only three months ago (pictured with mother Nicola Minshall and Adam Pickerill)
Lucas and Aiden had been developing as ‘perfectly normal and healthy’ babies until December 2022, when they started having seizures
The Madeley toddlers had started talking, feeding themselves and were almost walking before they became unwell
Lucas died on December 14 and Aiden on January 26, both at the Donna Louise Children’s Hospice in Stoke-on-Trent
When the seizures started, both toddlers lost all the skills they had developed and regressed to being like newborns
Nicola, 35, said: ‘It may not give you the answers to save them or help them, but at least you know which path you are on. It won’t take away the heartbreak or make it easier, but you can prepare for it
‘We didn’t want to do genetic testing on the boys, but I wish we did it sooner because we lived on false hope for months. Unfortunately for the boys, there is very little research into the condition they had.
‘If more people did genetic testing, more research would be done and hopefully a cure could be found. So that no more families experience this pure, pure torture, living nightmare.”
The Madeley toddlers had started talking, feeding themselves and were almost walking before they became unwell.
Nicola added: “They were the most wonderful, happy and cheeky boys. They were always smiling and loved by everyone who knew them.”
When the attacks started, they both lost all the skills they had developed and regressed to being like newborns.
Nicola said Lucas was always the first to show symptoms and Aiden followed a few weeks later.
The twins leave behind eight-year-old sister Josie and a “big hole” in the community where they lived.
The family has since shared regular updates on a Facebook page to raise awareness of the condition, which was only discovered in 2020.
Nicola added: “Please thank the staff at Royal Stoke University Hospital and Donna Louise Children’s Hospice who allowed us to be with them both after their deaths.
‘Please thank Marsh & Son funeral directors who have been absolutely wonderful throughout this process.’
A fundraiser has been set up for the family to help cover funeral costs.