A five-year-old girl from Ayrshire who is a ‘whirlwind of joy’ faces a daily threat to her life due to terrifying brain aneurysm.
Brave Jessica Entwistle from Ayr lives every day with a dangerous weakened blood vessel inside her head due to a rare undiagnosed disorder which is puzzling top neurological experts in the UK and across Europe.
She copes with a host of debilitating symptoms which affect her mobility and leave her drained of energy, meaning she has to use a wheelchair at times.
Her mum, Cheryl, 39, has said the last four years have been ‘torture’ after her 'little princess' began to have “episodes” mirroring symptoms of a stroke in March 2017.
Medics at The Royal Hospital for Children in Glasgow's neurology department ran tests to discover issues with her brain which were causing nausea, fatigue and numbness down one side Jessica’s body.
But last summer Jessica, a primary one pupil at Kingcase Primary School in Prestwick, temporarily lost her vision and was rushed to hospital where further scans revealed she had an aneurysm which could burst at any time.
Cheryl, who is a teacher at Doonfoot Primary School, has told the Ayrshire Post how her family have struggled to cope with the devastating news.
She said: “Jessica has had ongoing medical problems since she was 18 months old. She had quite a nasty episode in the house once, it looked as if she was having a stroke and we ended up in hospital in March 2017.
“She’s got daily symptoms, everyday is a battle for her she has so much to overcome.
"She lost her vision temporarily in the house and they scanned her again to see if there was anything else wrong with her brain.
“We couldn’t believe it when they told us she had a brain aneurysm. It was like a sledgehammer to your heart.
“This was only at the beginning of July last year, it has taken us all this time to try and process it.
Top medics in Glasgow who had been caring for Jessica reached out to experts in the field as far away as Switzerland, with a research team at Great Ormond Street Hospital in London now involved.
Medics suspect the aneurysm has been caused by a rare condition known as PHACE which causes developmental defects of the eyes, heart and brain – with only 400 cases ever identified.
Cheryl is desperate for the huge team behind Jessica to find the answers but one doctor fears they may never know a full diagnosis.
The mum-of-two, along with Jessica’s dad Thomas, 37, constantly fear that the aneurysm could rupture leading to a massive bleed in their little girl's brain.
Cheryl said: “She gets scanned in June again to check if the aneurysm has gotten any bigger, if we could scan her every day we would – it doesn’t matter what size it is, there is only a 50/50 survival rate if it does burst – the thought of that tortures me. I can’t sleep at night.
“She’s our wee perfect girl and it could all change in the blink of an eye – it is horrific.
“We’ve lived with this for four years next month when she had her first episode and we still don’t have an answer, it just keeps getting worse.”
In a bid to help medics find answers, the family have set out to raise as much funds to boost research around their daughter's rare condition, thanks to her big brother Aaron, 11.
Aaron, who also attends Kingcase Primary, thought of the idea to virtually walk to Great Ormond Street, covering 411 miles – with the challenge starting on Monday, February 1.
Cheryl added: “Aaron just wants to make his wee sister better, he lives with Autism and he just came out with the idea, 'let’s walk to London.' He is going to blog about it every day. For an 11-year-old boy to think about that is just amazing.
“For Aaron to have a focus during lockdown for his own mental health but ultimately help his sister and others is wonderful.”
Cheryl and Thomas, who is a mechanic at WMJ McCrones Auto-specialist in Ayr, have been married for seven years and never imagined their life being such a struggle.
But Cheryl has been inspired by her daughter's courage to continue to fight as the family are shut away from the risk of coronavirus.
She said: “Our children are the light of our lives, Jessica is a wee ray of joy, she is Jessica Joy that’s what we call her. She has a great sense of humour, she’s funny, sweet, loving and just our princess.
“She has no energy or stamina, she can’t go and play with her friends, she can’t do normal things.
“Her wee friends from school FaceTime her as she shields. When she went to school she could only go in the mornings but Kingcase Primary have been amazing with her and Aaron.
“The support from management at Doonfoot Primary has been so important for the position that we are in and I am truly grateful to them for that..”
Already a target set to raise £4,111 has raised £4,906 in just four days.
Cheryl is overwhelmed by the kindness and support of people and it’s truly grateful and she wants to raise a good amount for the best chance to help the amazing doctors involved.
She added: “I want to raise thousands to help with this research. Life for Jessica is really difficult, it is heartbreaking what has happened to her. We will do whatever we can to protect her and give her the best life possible.”
To donate to Jessica's Joys walk to London click here.
