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A three-year-old girl died of a crisis at an airport after a dream family vacation in the Maldives because of an illness that only two other children in the world have not recovered .
Three-year-old Ava Akers was taken to the hospital, put into a coma and had to be transferred to Bangkok after her undiagnosed Epstein Barr virus (EBV) encephalitis caused the crisis.
The family, who lives in Shropshire, made a 24-hour medical trip back to the UK on a medical plane. Ava was found in the intensive care unit of Birmingham Children's Hospital.
Ava Akers, three, has become one of only three children in the world to die from Epstein Barr Virus (EBV) encephalitis.
There, the doctors told the Akers family that "Ava that they knew part was gone," she had been severely damaged to the brain.
She died at home.
His parents, Phill and Helen Akers, have decided to launch a charity called Ava's Angels in his memory, bringing food and necessities to the Birmingham Children's Hospital to help families in the most difficult times.
Today, Mr. Akers, who works for a global digital computing company, has told the heartbreaking story of the family.
"Ava was a healthy three-year-old, ballet, swimming, pre-school and looking forward to starting school in September.
"We are frequent flyers and took her to Dubai, Abu Dhabi, Switzerland, Italy, Cyprus and Barbados, among others. She loved to travel.
"We had an excellent holiday in the Maldives in March 2017: catching a sea plane for the island where we were staying, watching rays feed, catching hermit crabs on the sea. beach and snorkeling, which she immediately took.
"We were at the airport, on the mainland, about to catch our flight to Dubai, and then to Birmingham when we asked her if she wanted to pick something from the souvenir shop as a souvenir. .
"She dropped it, which was different from Ava because she was never clumsy.
& # 39; Then she dropped to the ground after an atonic seizure. His eyes rolled back, his arms stretched and his whole body shook.
"Helen caught her and I took her in his arms and ran around the airport to ask for help.
Ava had a crisis at the airport on the return of the Maldivian family. Her father, Mr. Akers, said, "She was choking, I had never seen a child do a seizure before, it was so scary"
After spending a week in the hospital, Ava seemed completely normal and continued to sing, dance, eat and watch the movie Trolls but that afternoon she began to feel bad and to have hallucinations.
"She was choking, I had never seen a child do a seizure before, it was so scary, I thought she was going to die."
"It was traumatic, but once they started, the staff did everything in their power and it improved.
"We were moved to a larger hospital and spent a week there. She came back to normal by singing, dancing, eating and watching Trolls' iPad movie – she loved it.
"The doctors thought that she had had a throat infection and a urine infection. The compound effect can cause seizures in children under five, but they said that she would be fine.
"We were so lucky that she is doing well.
"We spoke to the medical manager of our insurance company to arrange a return flight.
"But that afternoon, Ava felt really bad, started having hallucinations and crying a lot.
Mr. Akers said, "They showed me the MRI and I could see that it was awful. There were two large white areas that showed swelling in the brain of Ava & # 39;
Ava was flown to one of the best private hospitals in the world, in Bangkok. Mr Akers said: "It is here that she was diagnosed with Epstein Barr Virus Encephalitis (EBV), a form of glandular fever that, in a minutia of cases, enters the body. blood in the brain, slowing it down and causing catastrophic damage within hours
She lost balance and was unable to walk. The doctors did an MRI and a lumbar puncture to examine the cerebrospinal fluid in his head and verify that it was not meningitis.
"They showed me the MRI and I could see that it was awful. There were two large white areas that showed swelling in Ava's brain.
"They said we had to take her to another hospital and at this point she fell into a coma.
& # 39; The insurance company organized a Learjet 45 medical evacuation with a doctor and nurse on board, which took us to one of the best private hospitals in the world, in Bangkok.
Ava went through other tests and was put on a survival machine. Her responsive flow was the one that meant that every minute she took only one breath.
"This is where she was diagnosed with Epstein Barr Encephalitis Virus (EBV), a form of glandular fever that, in a minutia of cases, penetrates the blood into the brain, which has the effect of slow down and cause catastrophic injury. hours.
"Ava has received immunoglobulin treatment, a multitude of antibodies to strengthen his immune system and steroids in his brain.
"It's very rare in children under five, there are only about 20 children in the world who have it and 18 have completely recovered.
& # 39; They said that Ava would be one of those who would recover and we hoped that everything would be fine.
EBV is very rare in children under 5, there are only 20 children in the world who have it and 18 have completely recovered.
Ava was repatriated to the UK in a medical plane that took 24 hours while she was still in a coma. The Akers family thought that her rehabilitation once back home would heal her
"Even though Ava was in a coma, they said we should go back to the UK. It was a huge relief to go home – we thought that she would have a detox and all that would be a hell of a story for her when she was older.
He continued: "After three weeks in Bangkok, we were evacuated to the United Kingdom by a medical plane.
"There was only one space for one of us to be there to make a decision if something was going on in the air." Helen said that I should go there and that she would come back separately.
"It took 24 hours because we had to stop to refuel in India, Russia and Austria.
Ava's temperature increased rapidly during the flight but the nurses managed to stabilize it. We spent our entire journey looking for baskets of embarrbadment that would trigger a crisis.
"An ambulance was waiting for us at the Birmingham airport terminal and we were taken to an intensive care unit in Stoke because Birmingham was full.
Ava spent three days there and was removed from the resuscitation unit as she began to breathe on her own. It was fantastic.
But she never opened her eyes.
"She was transferred to the high-addiction treatment unit of Birmingham Children's Hospital, where we spent three and a half months recovering.
"But she stayed dystonic all the way through (a neurological movement disorder causing tremors). Her muscles began to wither, her eyes opened but she could not blink.
She could not swallow because her jaw was locked and she could not move her head.
"The doctors sat us down and said," Ava will not give it up, she will never lead a normal life. The Ava you know is already gone. "
"We have heard that being in a pressure vessel containing a hyperbaric oxygen treatment can sometimes help, so we tried it four days a week for six weeks, but that did not help her.
"We said that, maybe if we took her home, it might help. They said it was worth trying, because sometimes if you recover a child in his environment, it can help him to rehabilitate himself.
"But by that time, we had not realized that she was blind and deaf brain lesions.
& # 39; His eyes were perfect but his brain could not calculate the signals.
We were taught to feed her and give her medications and muscle relaxants to comfort her so that we could take her home on weekends and then bring her back to the hospital. It was good to have it at home.
"After four months of hospitalization at the hospital, the doctors asked us if we wanted to start palliative care or if we wanted a survival machine to keep it alive.
"We decided to go into hospice palliative care because we thought it was the kindest thing we could do when you have a child who is so badly ill.
"She had no quality of life.
"We kept bringing her home and, it's home, July 29, that our beautiful daughter Ava died.
"Epstein Barr's encephalitis virus that affects children is so rare that none of the consultants we met in the UK and abroad have ever met with." saw a patient with this condition and can not explain why it happened, which is very difficult for us to understand.
"The same vicar directed his baptism and funeral and he said that he had directed services for people aged 80 who had not traveled in as many places as". Ava.
The Akers family has decided to create the charity Ava's Angels because it knows how easy it is to forget to eat and drink while you are at the hospital with a sick child.
"She loved traveling and we are delighted to have lived so much in her short life.
"She was so fun, loving and full of personality. She made us so proud.
The Akers family has decided to create Ava's Angels because she knows how easy it is to forget to eat and drink while you are in the hospital with a sick child.
Mr. Akes said, "While we were living at the bedside with Ava, we were extremely fortunate to be able to rely on our family and friends to bring us food, supplies and emotional support during the worst period of time. our life.
"When you do that, you forget to eat and drink and take care of yourself.
"Inspired by Ava and aware of the importance of support while taking care of a poor child, we launched Ava's Angels in March 2018 to provide support to families with sick children. during their stays at the hospital.
"We recognize that not all families benefit from this support and we want to help them by developing our network of supporters, volunteers and sponsors.
"We recently worked with Birmingham Children's Hospital and will have an official launch on Saturday, April 6th.
"We have already worked hard to raise money: golf days, marathons, sports events, etc.
"Helen, who works as an accountant, was very involved in the Netball Leisure Club and the wider netball community did a lot to support us.
"Every effort is made for volunteers to take meal orders for families and bring them the essentials, helping them to spend more time looking after their children when they need it most." .
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