A five-year-old Scots girl is living with a ‘ticking time bomb’ inside her head as medics around the world work against the clock to identify her mystery disorder.
Jessica Entwistle, from Ayr, was diagnosed with a brain aneurysm which is thought to have been triggered by an unknown genetic disorder.
Medics suspect the youngster is suffering from PHACE Syndrome which causes developmental defects of the eyes, heart and brain.
But her family have been told she is suffering from another disease which has yet to be identified.
The five-year-old only has a 50% chance of survival if her aneurysm ruptures.
Brave Jessica suffers daily from headaches, tremors and extreme fatigue which has left her wheelchair bound.
Despite best efforts from specialists at the Royal Hospital for Children Glasgow, Great Ormond Street Hospital and medics in Switzerland, the disease remains a mystery.
Mum Cheryl Entwistle, 39, says the family has been left “tortured” by Jessica’s ordeal.
She explained: “It hit us like a sledgehammer, you just don’t expect it.
“She's just five years old. The doctor said he had never seen anything like it, children this young don’t usually get brain aneurysms.
“It actually tortures us to think about what could happen.
“If I think too much about it, I can’t sleep at night, which is more often than not.
“But you have to keep going.”
Cheryl’s drive to move forward has now resulted in a crusade to raise vital funds to support research into Jessica’s condition.
Along with Jessica’s 11-year-old brother Aaron, mum Cheryl she is aiming to walk the distance from her home in Ayr to Great Ormond Street Hospital in London.
By the end of March, Cheryl hopes to have covered 411 miles by walking seven each day.
Cheryl explained: “We want to raise money to fund research into childhood brain aneurysms and associated brain disease, raise awareness and thank Glasgow Neurology Department for trying so hard to find answers for Jessica.
“Aaron suggested we walk to London as the doctors there are helping his sister.
“He actually thought we were going to walk all the way there, but we were a bit limited with lockdown.
“Aaron struggles with Autism so this is a huge thing for him, it gives him and all of us a focus.”
So far the GoFundMe page has raised more than half of its £4,111 target, but Cheryl hopes to surpass this figure.
She added: “I just want to raise as much as possible, because more research needs to be done.
“I said I’d happily walk back if it meant getting more donations.
“It’s been difficult taking the decision to put Jessica out there, but there might be other families in this situation.
“We have been to hell and back as a family and need something good to come out of this.
“Jessica is a brave little girl, our Little Bear, who from the outside looking in most people would have no idea what she has to battle on a daily basis.
“She has overcome so much and we are proud of both her and her brother.”
You can donate to Cheryl's fundraiser here.
