Charity set up in memory of Shropshire girl, 3, who died after suffering seizure on way home from holiday

Little Ava Akers was rushed to hospital, fell into a coma and had to be transferred to Bangkok after her undiagnosed and extremely rare condition caused the seizure. The family travelled back to the UK on a medical plane and Ava ended up on the high dependency unit at Birmingham Children's Hospital. Doctors told Ava's parents she was severely brain damaged and she later died at home.

Phill and Helen launched the charity Ava's Angels in her memory, taking food and essential items into Birmingham Children's Hospital to support families in their greatest time of need.

Among fundraising activities organised by the charity, which is based in Ackleton, near Bridgnorth, is a 90-mile charity walk in May from Wolverhampton Wanderers's Molineux ground to Liverpool's Anfield stadium.

Ava Akers

Nearly two years since Ava's death, Mr Akers has spoken about the family's moving story. He said: "Ava was a perfectly healthy three-year-old, enjoying ballet, swimming, pre-school, and looking forward to starting school in September.

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"We're keen travellers and had taken her to Dubai, Abu Dabi, Switzerland, Italy, Cyprus and Barbados among other places. She loved travelling.

"We'd had a brilliant holiday in the Maldives in March 2017, catching a sea plane to the island we were staying on, watching stingrays being fed, catching hermit crabs on the beach and snorkelling, which she took to straight away."

He said the family were at the airport on the mainland ready to return home when Ava dropped on to the floor having an atonic seizure.

"Her eyes rolled back, her arms went straight and her whole body was shaking," Mr Akers said.

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"Helen caught her and I picked her up and ran around the airport asking for help.

"She was choking, I'd never seen a child have a seizure before, it was so scary, I thought she was going to die."

Charity set up in memory of Shropshire girl, 3, who died after suffering seizure on way home from holiday Ava Akers

Ava was taken to a local hospital where she was stabilised, but it took around two hours because her parents had to buy drugs and equipment from a pharmacy and return to the hospital with them.

She was transferred to a larger hospital and appeared to be getting better so the family spoke to the chief medical officer from their insurance company to arrange a flight home. However, that afternoon Ava felt really unwell, began hallucinating and started to cry a lot.

Mr Akers said: "She lost her balance and was unable to walk.

"The doctors did an MRI scan and lumbar puncture to look at the cerebral spinal fluid in her head to check it wasn't meningitis.

"They showed me the MRI and I could see it was dreadful. There were two white large areas that showed swelling happening in Ava's brain.

"They said we'd got to get her to another hospital and at this point she fell into a coma."

Charity set up in memory of Shropshire girl, 3, who died after suffering seizure on way home from holiday A 90-mile charity walk is taking place from Molineux to Anfield in aid of Ava's Angels

The insurance company arranged a Learjet 45 medical evacuation with a doctor and a nurse on board, which flew the family to a private hospital in Bangkok.

Ava was put on a life support machine and was diagnosed with Epstein Barr Virus Encephalitis (EBV), a form of glandular fever, which, in a minutia of cases penetrates the blood in the brain, causing it to slow down and resulting in catastrophic damage in a matter of hours. She was given immunoglobulin treatment - lots of antibodies to boost her immune system and steroids to her brain.

The condition is very rare in under-fives - there have only been about 20 children globally to have it, and 18 fully recovered. Mr Akers said doctors expected Ava to recover and he travelled back to the UK on a medical plane with her.

From Birmingham Airport, Ava was rushed by ambulance to an intensive care unit at Stoke.

Transferred

Mr Akers said: "Ava spent three days there and was taken off the life support machine as she began to breathe for herself. It was fantastic.

"But she never opened her eyes.

"She was transferred to Birmingham Children's Hospital's high dependency unit and we spent three-and-a-half months there in recovery.

"But she remained dystonic throughout (a neurological movement disorder causing tremors). Her muscles began wasting away, her eyes opened but she couldn't blink.

She couldn't swallow because her jaw was locked and she couldn't move her head."

Doctors told Ava's parents that she would not recover and 'The Ava you know has gone'.

She was able to come home but died on July 29, 2017.

Inspired by Ava and seeing the importance of support while caring for a poorly child, the family launched Ava's Angels in March 2018 to provide support to families of sick children during hospital stays.

Mr Akers said: "We recognise not all families have this support and we want to help them by growing our network of supporters, volunteers and sponsors."

Find out more about the charity at avas-angels.com [1]

References

  1. ^ avas-angels.com (avas-angels.com)

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