A distraught couple has bravely spoken out about how their three-year-old daughter died after suffering a seizure on the way back from a dream holiday in the Maldives.
Ava Akers fell ill at the airport and was rushed to a hospital on the main island of the Maldives before her health deteriorated and she was transferred by plane to Bangkok.
After falling into a coma and being diagnosed with a rare virus, the parents decided to fly her back to the UK during a traumatic 24 hour journey back to the UK on a medical plane.
She ended up on the high dependency unit and spent four months at Birmingham Children's Hospital before doctors gave her parents the devastating news that the 'Ava they knew was gone' as she was severely brain damaged, Birmingham Live reports.
Following months in hospital, the Akers decided to start palliative care as "it was the kindest thing to do" and Ava died at home on July 29, 2017.
Her grieving parents Phill and Helen, from Shropshire, have since decided to launch a charity called 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.
Phill, who works for a global digital IT firm, described his daughter as a "perfectly healthy three-year-old, enjoying ballet, swimming, pre-school, and looking forward to starting school in September."
She loved travelling and had already been all over, including Dubai, Abu Dabi, Switzerland, Italy, Cyprus and Barbados.
The family had had a "brilliant" holiday in the Maldives in March 2017, which saw the little girl take part in some of the best activities the island has to offer, including catching stringrays and snorkelling.
Recalling how their ordeal started, Phill said: "We were at the airport on the mainland about to get our flight back to Dubai and then onto Birmingham when we asked her if she’d like to choose something from the gift shop as a souvenir.
"She dropped it, which was unlike Ava as she was never clumsy.
"Then she dropped onto the floor having an atonic seizure. Her eyes rolled back, her arms went straight and her whole body was shaking.
"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."
He said an Italian passenger came to their support and the girl then come out of her seizure.
It was about 3am when they arrived at a local hospital, but the parents were torn about how to get her seen by doctors - the only way to get treatment in the Maldives is to pay in advance, but the Akers' credit cards wouldn't allow such an unusual request.
One of the airport staff eventually volunteered to pay for them upfront.
The doctors did "everything they could" and Ava got better.
They were transferred to a larger hospital and spent a week there.
Phill said Ava was at that stage "normal" again, as she started dancing, singing and eating again.
The doctors had thought the little girl had a throat and urine infection, the compound effect of which can cause seizures in under-fives.
"We felt so lucky that she was going to be OK," Phill said.
They had started making plans to return when Ava started feeling "really unwell" again, as she hallucinated, cried a lot and lost her balance.
She was given an MRI scan and that's when "I could see it was dreadful", the dad said.
"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.
The insurance company managed to get them evacuated to a hospital in Bangkok, described by Phill as "one of the best in the world".
"Ava had further tests and was put on a life support machine. Her responsive rate was one which meant for every minute, she was only taking one breath."
That was when the girl was diagnosed with Epstein Barr Virus Encephalitis (EBV), a form of glandular fever which in a minority of cases penetrates the blood in the brain, causing it to slow down and resulting in "catastrophic damage" within hours.
Ava was given immunoglobulin treatment to fight the virus, which is known to have affected only 20 children globally, 18 of whom recovered.
"They said Ava would be one of the ones to recover and filled us with hope that everything was going to be OK", Phill recalled.
Despite Ava still being in a coma, they were urged to return to the UK.
Her dad described it as a "massive relief.
"We thought she’d have rehab and all this would be one hell of a story for when she was older."
After three weeks in Bangkok, the family was evacuated back to the UK on a medical plane, although only her dad went on the aircraft with her because there was no room for two.
It took 24 hours as they had to stop to refuel in India, Russia and Austria.
Ava's temperature increased during the flight but doctors managed to stabilise her.
"We spent the whole journey on tenterhooks that it was going to trigger a seizure," Phill said.
An ambulance waited for them at Birmingham Airport and they were rushed to an intensive care unit at Stoke as Birmingham was full.
Ava spent three days there before being taken off the life support machine as she started breathing alone.
"It was fantastic," Phill said. "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 the little girl was dystonic throughout, meaning she was affected by a neurological movement disorder causing tremors.
As her muscles started to "waste away", she could no longer move her head, her eyes would be open but wouldn't blink and she couldn't swallow because her jaw was locked.
"The doctors sat us down and said: 'Ava will not recover from this, she will never lead a normal life. The Ava you know has gone," Phill recalled.
Ava was put in a hyperbaric oxygen treatment pressurised container four days a week for six weeks but to no avail.
Phill carried on: "We said that, maybe if we took her home it could help. They said it was worth a try as sometimes, if you get a child back in their home surroundings, it can help them to rehabilitate.
"But we didn’t realise at that time that she was blind and deaf from brain damage. Her eyes were perfect but her brain couldn’t compute the signals.
"We were taught how to feed her and give her medications and muscle relaxants to give her some comfort so we could bring her home at weekends and then take her back into hospital. It was good to have her home."
After four months as inpatients in the hospital, the parents decided to start palliative care saying they "felt it was the kindest thing we could possibly do when you have a child who is so severely poorly.
"She had no quality of life.
"We continued to bring her home and, it was at home, on July 29, that our beautiful girl Ava passed away," Phill said.
Touched by the support they got from family and friends during their hardship, the parents in March 2018 launched the Ava’s Angels charity to provide support to families of sick children facing hospital treatment.
"We recognise not all families have this support and we want to help them by growing our network of supporters, volunteers and sponsors", Phill said.
Find out more here and get in touch here: team@avas-angels.com
