#do i explain to her about the traumatic Saturday events even though it's none of her business

[fazcinatingblog]

Can I not sleep because it's hot or because I'm having nightmarish thoughts about sophia

[jewish-privilege]

[Originally published August 09, 2019] - (...) Tisha B’Av is the day that telescopes many of the main catastrophes of Jewish history in its entirety into one day... The events ascribed to the day have to do with separation between God and Israel, both spiritual and physical; the five events connected with the ninth of Av and the 17th of Tammuz, three weeks prior, are discussed in the Mishna Taanit 4:6.

(...) For those who have trouble with understanding the holiday, this explanation by Rabbi Joseph Soloveitchik, the core teacher of modern Orthodoxy even 26 years after his 1993 death, should suffice: “We observe this saddest day of the year because we cannot understand why our people continues to suffer so much tragedy.” I definitely don’t understand how 11 devoted people could be killed as Jews in America in 2018. Since Oct. 27 [2018,] the place where we celebrated the bris of a congregant’s grandson became the place of the grandfather’s death; the same man who was the mohel at that joyous occasion then served on the chevra kadisha. The whole synagogue building has lain empty, a vacant shell, ghost structure standing as a vivid reminder of what is no more: 11 Jews killed only for the crime of worshipping as Jews on the Sabbath.

No longer an abstraction, these dirges for what is lost; now they encapsulate part of my reality. The reality that we can’t use the place where we had gathered in happy times—for a Purim megillah reading, play, and meal, a Sukkot dinner, a concert of Magavet, the Yale University Jewish singing group—is now a place of death and destruction whose name and photo are known internationally. The social hall where I have attended bar and bat mitzvahs and weddings, the same hall where I danced, became the area that Zaka and the chevra kadisha performed their sacred and tragic duties, and people l knew from other contexts, like my daughter’s SAT math tutor, were now in full-body protective wear and hairnets so that the bodily fluids they were cleaning up would not transfer to their own living bodies.

..And yet, I will read this verse from Lamentations on Saturday night: “the comforter who should restore my soul is far from me, my children are desolate because the enemy has prevailed.” (1:16) I have never felt more that there are so many to comfort me, my family, my community and that evil has not prevailed though it has done great damage(...) Congregants are stepping up to learn the synagogue skills possessed by those three of our congregants no longer with us. Looking up the Hebrew birthday for a woman who never had a bat mitzvah as a girl, we found the Torah portion for her birthday was the same as one of those who were killed. She will be reading that Haftarah in 2020 as well as in years to come.

Though it is not hard to get in mood for Tisha B’Av this year, since I feel like I have been enduring that feeling since Oct. 27, I also remember that even though the Temple was destroyed so many years ago, and was an unmitigated catastrophe, the expulsion of Jews from the land created the necessity to find new forms and ways to continue the religion.

“The nature of trauma,” Bessel van der Kolk a psychiatrist and expert in post-traumatic stress, has said, “is that you have no recollection of it as a story. The nature of traumatic experience is that the brain doesn’t allow a story to be created.” (...) The inability to create a story reminds me of the passage in the Babylonian Talmud Makkot 24b that Rabbi Amy Bardack taught as part of her class on “Jewish Texts of Resilience” at our community Shavuot Tikkun. Four rabbis are walking in the destroyed Jerusalem, on Mount Scopus and then the Temple Mount. One of them, Rabbi Akiva, laughs to see foxes scurrying over the Temple Mount (in Hebrew har habayit, literally the “mountain of home”) while the others are despondent. His colleagues interrogate him—how can you laugh when this place, once an abode of fear and trembling before God, is now so profaned that animals trample it? Rabbi Akiva explains to them about that the prophecies of Uriah during the First Temple and of Zechariah during the Second Temple, that the one, “Zion shall be plowed for a field” (Micah 3:12) is dependent on the other, “there shall yet be elderly men and elderly women in the streets of Jerusalem” (Zechariah 8:4). Destruction must transpire for redemption to happen. Akiva has created a way to tell the story; his laughter and its explanation stop the trauma, for the others tell him he has comforted them.

...My own personal version of transforming tragedy into renewed vigor to have laughter and joy came two weeks ago when I had a visit from a woman I met on the sherut (shared taxi) I took two months ago when I left Jerusalem, where I had been celebrating Passover, to return to the airport en route to Pittsburgh. The sherut driver only takes cash and at the end of my trip, I had none. So I had to ask the other passengers to spot me the money for a check or Venmo (if my kids assisted that interaction). Another passenger agreed, and we chatted. She told me she, too, was from Pittsburgh originally and would be here later in the summer. We exchanged emails, and I gave her my check. I hadn’t expected to hear from her further; however, when she was visiting in July, she emailed me and we set a date to have coffee. She told me the address of her childhood house: It was literally on the same block as mine, around the corner. I heard more of her story—a man followed her father home 25 years ago and broke in to murder him. Her mother had been terminally ill and died a few weeks later, as did her grandmother. But now, she told me, every birthday, every milestone, every moment with the grandchildren she moved to Israel to be near, brings her intense joy. The tragedies she suffered magnify her need to wring every bit of joy from each occasion, her pleasure highlighted by the knowledge that horror, too, may be around the corner.

I have a heightened grasp of the holiday of destruction this year. Yet, I also have a heightened awareness: Once ceased, joy may after all be renewed and restored.

[uniarycode]

Takari Week, Day 1 - Confession

Takeru has spent weeks trying to confess to Hikari but somehow he can never actually get it out.  Hikari has a different interpretation on how they’ve been spending their time.  Done as part of @takariweek 2020

Today was the day.  Today everything would change for better or for worse.  Today marked the first sentence of a new chapter of his life.  Today was the day he was going to confess to Hikari.

Unlike all those other sentences he had to re-write.

This was not the first day this month Takeru had planned to confess.  However, he was a romantic at heart, and no matter how much resolve he had beforehand somehow the moment never felt right.  He would always be able to tell their grandkids about how they met, but he wanted to be proud or the story of how he first asked her out.  And none of the opportunities so far fit his taste.

It was either that or he was afraid.  

Even if his confession was successful, it would still mean a fundamental change would occur in his and Hikari’s relationship.  And Takeru had a mixed relationship with change. Change meant the loss of his father and brother.  Change meant the introduction of a strange world filled with monsters.  Even the first time Patamon had changed into a new form had led to one of the most traumatic events in his life.

But change also led him to meet Patamon in the first place, something he wouldn’t trade for all the riches in the world.  Change meant moving to the same school as Hikari, and meeting Miyako, Iori, Daisuke and Ken.  Change meant that one day society might accept Digimon as a whole.

And whether he liked it or not, change was coming.

It was still surreal to him; his brother and Taichi had always seemed so close.  They had never been part of the same cliques, and they spent almost as much time fighting as hanging out.  But their friendship always eclipsed everything else, social standings, heated disputes, none of it mattered; they were best friends, through and through.

Then college happened. Now the legendary duo’s primary means of communication was via their siblings.  Hikari would learn some new fact of her brother’s life, tell Takeru during the course of casual conversation, and Takeru would update his brother of the going-ons later that week.

It wasn’t just them.  Even Mimi, who had an incessant talent for attaching herself onto someone and refusing to let them go, seemed much further from the rest of the chosen then she’d even been while she lived in America.

Takeru knew their bond was strong, that what the eight of them had done could not be forgotten or replaced.  But even if distance could not destroy the bridge holding them together, it could certainly increase the hassle of travelling back and forth.

The last thing Takeru wanted was for that distance to appear between himself and Hikari.  This was their final year in highschool, if he didn’t at least try now he might not ever get the opportunity again.  He needed to try, despite the inherent risks.

Besides, Hikari had rejected Daisuke dozens of times, and they were still friends, right?

Gathering his courage, Takeru had asked Hikari if they could have a day to themselves, ‘just the two of them’.  He’d suggested Wednesday, when neither club duties nor pressing assignments devoured too significant portions of their time.

Ever the romantic, he had it all planned out: First, karaoke.  A good, private way to judge the mood, and get Hikari to let her hair down.  Next, they had tickets to a movie, the new Disney flick that Hikari had been dying to see but never gotten around to (and without someone pressing, likely would not until it became available on dvd.) Finally, a romantic stroll on the boardwalk at sunset.

The boardwalk overlooking the bay.

The bay where they fought Ordienmon.

The bay where they’d been forced to kill one of their friends.

It was only after beginning his long-rehearsed spiel that Takeru had this epiphany, and, fearful that his date may have been quicker on the uptake than himself, he scrambled for a plan B.  

Salvation came in the form of a nearby cat café, he knew as soon as he suggested it that Hikari would lose herself in the felines, paying more attention to the four-legged critters than she did to him, but it was worth it to avert potential catastrophe.

Fate still deigned to mock him however, from the instant he sat down a maine-coon attached to him, refusing to move from his side, or to let the memories of past failures escape.

All cats attached to Hikari, she merely shared them with the other customers as she saw fit.  There was no doubt she enjoyed herself, but the moment had been well and truly ruined.

Takeru had managed to obtain an opportunity of redemption. ‘Same time next week’ had been the agreement, and he had near instantly resumed planning.  Whatever he came up this time had to top what he’d just done, or else he might have to explain away his mistake.

But even the most perfect plan does not survive contact with the enemy, and the enemy presented itself as an ill-timed phone call from his father.   One of his coworker’s households had apparently been graced by the appearance of a small white blob with a voracious appetite, and Hiroaki was wondering if his son could stop by after school and help calm the panicking mother, perhaps also giving tips for digital care.

Hikari would not allow him to say no, and insisted on tagging along.  But the TV station itself held a lot of painful memories for the girl, every year she returned with an offering of flowers and incense for Wizardmon’s grave.

It was far from a total waste since an idol Hikari had been following was also present.  Somehow the idol had overheard their arrival, and considered themselves interested in the pro-digimon cause.  In fact, the idol had been downright helpful, asking questions of him and Hikari that the coworker was likely to embarrassed or too naïve to think of.  Hiroaki ended up taking them all out for dinner, and they chatted for hours, finally assuaging the fear of a parent whose daughter now had a dog-head as a life partner.  

By that point, he had to take Hikari home, with no real opportunity to confess, even if Wizardmon wasn’t on her mind.

The third attempt was a no go from the beginning, Hikari had been sent into a rare, foul state.  All she wanted to do was eat ice-cream and rant, so they went to a dairy-bar overlooking the beach.

He’d let her vent when she wanted to vent, and when she was done he did what he did best: deflecting the conversation to some odd antics of Daisuke or his brother, anything to get her happy and cheerful again. Even after her mood had recovered, steering the conversation towards a confession felt like he might be taking advantage of her, or putting her on the spot somehow.

Cheering her up was reward enough, even as he paid for the forty-flavor super-jumbo, bottomless Sunday that they’d managed to make a liar out of.

(He’d eaten perhaps an eighth of it, there was no doubt in his mind that Hikari could have eaten the whole thing; but she at least wanted the plausible deniability to claim that he’d consumed half the calories.)

The fourth attempt was similarly doomed, he’d been too sick for school that day, and while Hikari had dropped by, he was too delirious to form a real confession, or for her to take any confession seriously.

The feel of her hand stroking his hear as she tended to him had been so heavenly though.  He couldn’t regret the experience.

By this point Takeru was convinced their Wednesday gatherings were cursed.  There was little reason Hikari would even see them as special.  And while he always enjoyed spending time with her, especially just the two of them, he was worried that regularity may dampen the splendor he’d initially been going for.

This week he requested to move their weekly hang out session to Saturday.  It would allow more time for them to be out at night, and thus more time for him to enact his perfect confession.  Hikari’s father was away on business, and her mother had already agreed to be rather lax on her daughter’s curfew.

His mother had not, but she would not punish him if he told her he was out on his first date, nor would she punish him after getting rejected, yet another reason he needed to actually spit it out today.

And it seemed all the stars were aligning, on top of her father being out of town: a photography exhibition at a local gallery was going for half price, and her favorite indie group were headlining a public concert at the beach until sundown.  Finally, there was a forecast for a clear, bright moon, and a local botanical garden was advertising a moonlit stroll through their flowers.

Hikari had agreed on one condition: they could wade through the shallows, but not do any real swimming at the beach.  It had seemed odd to Takeru at first, but the beach had been more about the free concert than seeing her in her swimsuit.

***

When Takeru arrived at the Yagami apartment he was stunned by the vision of beauty that graced him.  Hikari was wearing a strapless dress, black with accents of pink and white, that he’d never seen her in before.   Based on how high her head was coming up his body, she had to be wearing quite daring heels as well.

And her makeup had been done with so much precision and effort he had to wonder if perhaps Mimi had come back to town to help her.

“T-Takeru?” she asked, and he realized he must have been staring.

“I’m sorry, have you seen Hikari?  Brown hair, about yea tall,” he held his hand about three feet off the floor, “may have a family of ducklings following her around.”

“That was one time.” She scolded.

Takeru stood on his tip toes and moved one hand to sit above his eyes, like a visor.  “Hikari? Is that you?  Are you trapped behind this radiant goddess in front of me?”

A tell-tale pink infiltrated her cheeks as she turned around.  “It’s too much isn’t it?  I could still maybe change and-”

His hand shot out and grabbed her arm before she could escape. “You look perfect.” He said sincerely, pulling her in for a hug. “Besides, people at the exhibit will be expecting beauty and art.  They just may not be expecting the source.”

“You’re just saying that.” She deflected.

He wasn’t.

Takeru was not the same connoisseur of photography Hikari was.  When push comes to shove, he wasn’t sure anyone was the same connoisseur of photography Hikari was.  That said, he enjoyed exhibits well enough.  He liked to look at the pictures, and soak them in.  Try and memorize every detail to regurgitate later.  

Or occasionally, he would find a particular picture, and write a story in his head.  How had they gotten here, to this moment, what did picture mean to the squirrel which was the focus?  What was he doing immediately before?  How did this moment change his life?

Such joys eluded him today, instead his focus was solely on the brunette accompanying him.  The pictures only mattered in how they changed the expression on her face as she examined them.  

After exiting the gallery, there was still about an hour before the band started playing at the beach, they stopped for a bite to eat, and Takeru did his best to fake his way though her questions on the exhibition.

What was his favorite photo?  He named one on the left wall of the one she stared at for ten minutes, that had framed her head the whole time.  Why?  He made up some impromptu story he’d concocted about the scenery involved.  It won him a laugh from her as he turned the questions around.

When they got to the beach, Hikari replaced her heels with flat sandals she kept in her purse.  Takeru noted that he at least recognized the heels this time, unlike her dress, but he’d still never seen her wear them before.

Despite her insistence they not swim, (something Takeru now realized had to do with the amount of time she’d spent on her makeup,) hikari had instantly dragged him towards the water, to wade in the shallows.  They didn’t go much more than ankle deep, anymore and they risked getting hikari’s dress and his shorts wet, but it had been romantic nonetheless.

When the main act began to play, they collected their shoes and moved towards the stage, communications dampening as the speakers drowned out all sounds but the band on stage.

Takeru didn’t need words, the sight of Hikari, framed by the sunset, losing herself in the moment was more than enough for him.

It was twilight when the band’s ‘second encore’ had concluded and the crowd began to peter out.   There was a small ice-cream sack on the beach, and Hikari rarely turned down an opportunity for more of the frozen delight.

They talked about the concert, the waves on the beach, of everything and nothing all at once, until the residual light from the sun faded and the moon came in full force.  In the city like this, there was always a glow of artificial light, but it did not diminish Tsukuyomi’s splendor.

Meandering towards the botanical gardens, continuing their chatter about daily life.  Just outside Hikari stopped him, finding a bench to switch back from flats to heels, insisting it was more ‘proper’.  Takeru didn’t let her get away unscathed, suggesting that if she wanted to feel taller, stilts would be more appropriate.  She responded by playfully warning him that he may ‘wake up one day, two feet shorter’.

Neither comment had nearly as much effect as when the woman at the counter remarked on ‘What a beautiful date this would make’ and how she ‘wished her boyfriend had been so romantic at that age.’

Hikari’s face could be mistaken for a tomato, and Takeru adopted an uncharacteristic stutter as he paid their admission and ushered Hikari outside.

The woman’s words had a chilling effect, the natural conversation had all but dried up, replaced with subtle pleasantries and tepid remarks about the moonlit flowers.  Before long Hikari had her camera out, taking pictures of the various plant life, abandoning most conversation all together.

Was this it, had such a small, well-meaning action already cursed him?  Everything was going so well.  Was he a modern Sysphus?  Doomed to forever push himself up the hill of a relationship with Hikari only to fall down at the pinnacle and start all over?

“Takeru?” Hikari asked, snapping him out of his monologue, “Are you okay?”

“Fine.” Takeru replied “Just thinking.”

She grabbed his arm, pulling him towards a nearby bench. “Come on, let’s take a break, these shoes are killing me.”

“The price of fashion.” Takeru said sagely.

After they reached the bench, and Hikari had relieved herself of her footwear, they paused, focusing on some hydrangeas flow in the wind, accented by moon light.  A weight appeared on Takeru’s shoulder, where Hikari began to rest her head.

“Right now.” She said “This moment just feels so…perfect.”

Takeru took a deep breath.  He had the most wonderful girl on his arm, after spending nearly eight hours with her. “Yeah, perfect.”

A perfect moment.

It was unlikely a better opportunity would present itself.

“Hikari.” He said suddenly, just as she chimed in with his name. “Sorry,” they said in unison.

Her head pulled off his arm, quite disappointingly in his opinion, as she turned to face him.

“Ladies first.” Takeru said “I insist.”  She gave him a soft look, knowing that he wouldn’t let her win this one.

 “Okay.” She started “This last month, has just been so wonderful, so amazing.  I know I’m not the most experienced with this, and I know we haven’t really put a name on it, but it’s still been like something out of a novel.  I guess I should expect that from you.”

She had begun to look down, rummaging through her purse, as takeru tried to sort out exactly what she was talking about.  Had it already been a month since they started these ‘friend-dates?’

Hikari continued obliviously, “It’s not much, especially since you seem to do all the planning, but I thought you’d like it.” She pulled out a tightly-wrapped box. “Happy  one-month anniversary.”

Ani-what?

Dates rolled back in his head as he began to piece things together; the dress, the makeup, the heels, those were all for him?  Had she always been considering these less friend-dates and more dates-dates?

And he, in a move of pure coincidence, had moved this week’s date to Saturday, one month to the day of that first date, and even asked her mother for permission to stay out late.

Takeru did the only thing he could think of in the moment.

He laughed.

“Tak-Takeru?” she asked, and he could already sense fear and hesitation begin to well up within her as she saw her (boyfriend?) laugh at her anniversary gift.  He grabbed her and pulled her into a hug to dissuade any doubts.

“Happy anniversary,” he said when his hysterics died down.  “One month, I’ve been trying to confess for a month, and you hit me with that.”

“Wait, confess?” Hiakri said, begging a laugh of his own that quickly spread to Takeru.  “All this time and you didn’t even think we were dating?  You completely stopped flirting with everyone else.  Did you really think I didn’t…”

“We’re quite the pair, aren’t we?” Takeru teased in response.

“Yeah,” Hikari agreed. “Well, if you finally managed to confess after all that, maybe I can do something I’ve been too scared to do for the last month.”

Takeru looked down at her, “What would that be?” he asked leaning in close.

“This.” She pressed her lips against his.

[gyrlversion]

Little girl, three, dies after suffering a seizure at the airport

A three-year-old girl died after suffering a seizure at an airport at the end of a dream family holiday in the Maldives because of a condition which only two other children in the wold have not recovered from. 

Ava Akers, three, was rushed to hospital, fell into a coma and had to be transferred to Bangkok after her undiagnosed Epstein Barr Virus Encephalitis (EBV) caused the seizure.

The family, who live in Shropshire, made a traumatic 24 hour journey back to the UK on a medical plane and Ava ended up on the high dependency unit at Birmingham Children’s Hospital.

Three-year-old Ava Akers became one of only three children in the world to die from Epstein Barr Virus Encephalitis (EBV)

There, doctors gave the Akers family the devastating news that the ‘Ava they knew was gone’ as she was severely brain damaged. 

She died at home.

Her parents, Phill and Helen Akers, 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.

Today, Mr Akers, who works for a global digital IT firm, told the family’s heart-wrenching story.

He said: ‘Ava was a perfectly healthy three-year-old, enjoying ballet, swimming, pre-school, and looking forward to starting school in September.

‘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.

‘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.

Ava had a seizure in the airport on the family’s way back from the Maldives. Her father Mr Akers said: ‘She was choking, I’d never seen a child have a seizure before, it was so scary’

After Ava spent a week in hospital she seemed completely normal and continued singing, dancing, eating and watching the Trolls film but that afternoon she began to feel unwell and hallucinate 

‘She was choking, I’d never seen a child have 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 they could and she got better.

‘We were transferred to a larger hospital and spent a week there. She went back to normal, singing, dancing, eating and watching the Trolls movie on the iPad – she loved that film.

‘The doctors thought she’d had a throat infection and urine infection. The compound effect can cause seizures in under-fives but they said she would be fine.

‘We felt so lucky that she was going to be OK.

‘We spoke to the chief medical officer from our insurance company to arrange a flight home.

‘But that afternoon Ava felt really unwell, began hallucinating and started to cry a lot. 

Mr Akers said: ‘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’

Ava was flown to one of the best private hospitals in the world, in Bangkok. Mr Akers said: ”It was here that she 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 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.

‘The insurance company arranged a Learjet 45 medical evacuation with a doctor and a nurse on board, which flew us to one of the best private hospitals in the world, in Bangkok.

‘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.

‘It was here that she 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.

‘Ava was given immunoglobulin treatment – lots of antibodies to boost her immune system and steroids to her brain too.

‘It’s very rare in under-fives, there have only been about 20 children globally to have it, and 18 fully recovered.

‘They said Ava would be one of the ones to recover and filled us with hope that everything was going to be OK.

EBV is very rare in under-fives, there have only been about 20 children globally to have it, and 18 fully recovered

Ava was transferred back to the UK on a medical plane journey which took 24 hours while she was still in a coma. The Akers family thought that the rehabilitation she would get once she was home would cure her

‘Even though Ava was in a coma, they said we should transfer back to the UK. It was a massive relief to be coming home – we thought she’d have rehab and all this would be one hell of a story for when she was older.

He continued: ‘After three weeks in Bangkok, we were evacuated back to the UK on a medical plane. 

‘There was only space for one of us to be there to make a decision if anything happened mid-flight. Helen said I should go and she would fly back separately.

‘It took 24 hours as we had to stop to refuel in India, Russia and Austria.

‘Ava’s temperature rose rapidly during the flight but the medics managed to stabilise her. We spent the whole journey on tenterhooks that it was going to trigger a seizure.

‘An ambulance was waiting for us at the terminal at Birmingham Airport and we were rushed to an intensive care unit at Stoke as Birmingham was full.

‘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.

‘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”.

‘We heard that sometimes being in a hyperbaric oxygen treatment pressurised container can help so we tried that four days a week for six weeks but it didn’t help her.

‘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 doctors asked us if we wanted to start palliative care or if we wanted the life support machine to keep her alive.

‘We decided to start on palliative care because we 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.

‘Epstein Barr Virus Encephalitis affecting children is so rare that none of the consultants we met from the UK and overseas have ever seen a patient with this condition, and cannot explain why this happened, which is very difficult for us to understand.

‘The same vicar led her christening and her funeral and he said he’d led services for people who were 80 who had not travelled to as many places as Ava.

The Akers family decided to set up the charity Ava’s Angels because they know first hand how easy it can be to forget to eat and drink while you are in hospital with a sick child

‘She loved travelling and we’re glad she experienced such a lot in her short lifetime.

‘She was so fun, loving and full of personality. She made us so proud.’

The Akers family decided to set up Ava’s Angels because they know first hand how easy it can be to forget to eat and drink while you are in hospital with a sick child. 

Mr Akes said: ‘While we lived at the hospital bedside with Ava, we were extremely lucky to have family and friends who supported us, bringing us food, supplies and emotional support in what was the worst time of our lives.

‘When you’re doing this you forget to eat and drink and look after yourself.

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

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

‘We have recently been working with Birmingham Children’s Hospital and will have an official launch on Saturday April 6.

‘We’ve been doing lots to raise money already – golf days, marathons and sports events and more.

‘Helen, who works as an accountant, was heavily involved with Dudley Leisure Netball Club and the wider netball community has done lots to support us.

‘It’s all so we can arrange for volunteers to get lunch orders for families and take them the essentials, helping them to spend more time caring for their child when they need to the most.’ 

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