Girl with brain aneurysm has left doctors baffled
A five-year-old girl 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 that 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, 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 of Jessica’s body. Last summer Jessica, a primary one pupil at Kingcase Primary, 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, has told the 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, 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, 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.
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 said: “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.
Cheryl and Thomas, who is a mechanic at WMJ McCrones Autospecialist, 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 added: “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.
To donate to Jessica’s walk to London go to https://uk.gofundme. com/f/jessica-joys-journey