The parents of twin boys diagnosed with a rare genetic condition reported just 13 times worldwide have spoken out and shared a tragic update.
Two-year-old Lucas and Aiden Pickerill from England were diagnosed with a rare genetic mutation known as NRROS shortly after turning two years old. According to the reports, only 13 cases of the ultra-rare condition have so far been reported around the world.
And while the babies initially appeared “completely normal and healthy,” problems started to show in December 2022 when they started suffering from seizures.
Unfortunately, Lucas succumbed to his symptoms on December 14. Aiden followed him just weeks later on January 26.
“It may not give you the answers to save or help them but at least you will know what path you’re going on. It won’t take the heartbreak away or make it any easier, but you can prepare yourselves,” Nicola said as she urged other parents to make their children undergo genetic testing as soon as possible.
“We didn’t want to do genetic testing with the boys but I wish we did it sooner because we were living on false hope for months. Sadly for the boys, there’s very little research on the condition they had.
“If more people did do genetic testing, more research would be put in and hopefully a cure could be found. So no more families go through this pure, pure torture, living nightmare.”
Unfortunately, the rare condition currently knows no specific treatment.
“They were the most amazing, happy and cheeky boys. They were always smiling and loved by everyone who knew them,” the grieving mom added.
Despite the tragic outcome, Nicola also took the opportunity to thank the medical staff at the Royal Stoke University Hospital and The Donna Louise Children’s Hospice.
“Please give a massive thanks to the staff at the Royal Stoke University Hospital and The Donna Louise Children’s Hospice which let us be with them both after their passing,” she said.
“Please thank the funeral directors Marsh & Son who have been absolutely amazing throughout this.”
Our thoughts remain with the family during this challenging time.