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ESME THE LIONHEART

Girl, 3, dies in her parents’ arms on New Year’s Day after leukaemia battle

A LITTLE girl who won the backing of thousands of strangers online died of leukaemia on New Year's Day.

Esme Handley was just three years old when she passed away.

 Little Esme Handley died in her parents' arms on New Year's Day after being diagnosed with blood cancer at 22 months old
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Little Esme Handley died in her parents' arms on New Year's Day after being diagnosed with blood cancer at 22 months oldCredit: gofundme.com
 The tot's heartbroken parents shared the news on her Facebook page
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The tot's heartbroken parents shared the news on her Facebook pageCredit: EsmeLionheart/Facebook

The adorable tot was diagnosed with blood cancer at just 22 months, after developing a bruise while she was on a family holiday in Greece.

Her parents Rebecca and Will broke the heartbreaking news on their daughter's Facebook Page, named Esme Lionheart after her love of lions.

They said: “If you look to the sky tonight you will see a star shining brighter than any other.

“Our darling girl went onwards with her journey at midday today.

"She was peaceful and in our arms and knew how ridiculously adored she was.

“Esme Grace Angela Handley 13.08.2016 - 01.01.2020.”

Rebecca, 38, and Will, 43, faced a battle to try and save their only daughter following her diagnosis.

They discovered she had the high risk acute myeloid leukaemia during a family trip to Greece before which Esme fell.

 Esme developed a bruise when she was on holiday in Greece, when it failed to disappear her parents Googled her symptoms
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Esme developed a bruise when she was on holiday in Greece, when it failed to disappear her parents Googled her symptomsCredit: EsmeLionheart/Facebook

When a bruise that developed shortly afterwards failed to disappear, the couple Googled Esme's symptoms and became concerned.

She was taken to hospital in Greece where the diagnosis was confirmed.

Esme was given a stem cell transplant in September 2018 alongside three rounds of chemotherapy but after six months the leukaemia returned in the tot’s bone marrow.

If you look to the sky tonight you will see a star shining brighter than any other. Our darling girl went onwards with her journey at midday today.

Rebecca and Will Handley

The family were not eligible for a second transplant on the NHS and were faced with raising £500,000 privately for the urgent treatment.

In November, her parents admitted that Esme could no longer expect to be cured and said their baby had simply had enough.

They said: “Since diagnosis we have often spoken about a metaphorical 'sealed envelope' that contains Esme's fate.

"Yesterday we got to open that envelope and it was not what we had hoped.

“The leukaemia is out of control and there is nothing more which can be done.

“We have spoken with every single, leading paediatric consultant globally, tried all available drugs (some of which aren’t even licensed in kids), explored a ridiculous amount of supplements and complementary medicines, had healing circles far and wide sending prayers.....

“But it’s not been enough. We don’t get to keep our baby.

 Esme had a stem cell transplant, as well as three rounds of chemo but after six months the leukaemia returned
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Esme had a stem cell transplant, as well as three rounds of chemo but after six months the leukaemia returnedCredit: gofundme.com

“And to be perfectly honest, even if there was something else they could come up with, right now, I’m not sure we would be able to pursue it.

"It’s very clear to see that Esme has simply had enough....and who could blame her?

“Esme thrives when she’s outdoors but all she has known for 18 months is hospitals. The treatment she has had wouldn’t be tolerated by most adults.

“She has been continually pumped full of drugs; had hundreds of blood transfusions; successfully come through one stem cell transplant; had surgery for three Hickman lines into her heart; had numerous tubes shoved up her nose and drops in her eyes, suffered countless horrendous infections including a type of pneumonia three times; lost her hair; lost her fingernails; vomited daily, had her skin break down, crack, be burnt from chemo; nearly died from sepsis; almost died from anaphylaxis; been blue-lighted to PICU after having a seizure which temporarily left her in a vegetative state thanks to a fungal brain infection....and it goes on.

“Whilst we would do absolutely anything for her, ANYTHING, I’m also not sure how much more we can tolerate either.”

A month later, they described the heartbreaking cocktail of pain management Esme had to bear to soften her “ever-increasing suffering".

 Her parents said she had faced so much, and they felt she couldn't take much more
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Her parents said she had faced so much, and they felt she couldn't take much moreCredit: EsmeLionheart/Facebook

At the time, her parents posted: “It's now three weeks to the day that we learnt that Esme's story will not have the happy ending we've all prayed for, three long weeks in which we've had to contemplate the unthinkable and bear witness to Esme's ever-increasing suffering.

“In the first couple of weeks one of the biggest difficulties was accepting that the team's goal was no longer to cure but just to manage pain.

“This sounds obvious but you suddenly find yourself inexplicably sad that the nurses are no longer asking you for Esme's heart rate or temperature every few hours.

“At one point I even found myself crying when I bumped into another child being wheeled to theatre and realised Esme will never have another general anaesthetic.

“Instead, getting ahead of Esme's pain has become a full-time occupation for us and the team, and Ezzie is now on an ever-escalating daily mix of paracetamol, topical morphine, oxycodone, ketamine and, most recently, methadone.

 Rebecca and Will told Esme's followers that she died in their arms, peacefully and knowing she was loved
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Rebecca and Will told Esme's followers that she died in their arms, peacefully and knowing she was lovedCredit: EsmeLionheart/Facebook

“The psychology team here warn against reading adult meanings into our children's innocent words but it's difficult not to tear up when Esme tells us repeatedly ‘I don't think my bottom's ever gonna get better, it's the hurtiest bottom in the whole world’ ....or ‘My arm/leg/back/headache is killing me.”

They also described how Esme had been bedridden for three months and would never walk again.

But the tot had her own Christmas tree and was even taken out of the Royal Marsden Hospital over the festive period to see Christmas lights in Morden before a screening of Frozen 2 at Everyman Esher.

SIGNS OF LEUKAEMIA EVERY PARENT NEEDS TO KNOW

LEUKAEMIA is a type of blood cancer, some forms of which are more common in children.

There are no specific signs or symptoms which would allow for a doctor to make a diagnosis without lab tests.

In all types of leukaemia symptoms are more commonly caused by a lack of normal blood cells than by the presence of abnormal white cells.

As the bone marrow becomes full of leukaemia cells, it is unable to produce the large numbers of normal blood cells which the body needs.

This can lead to:

  • Anaemia
  • Weakness and tiredness
  • More frequent infections
  • Fever
  • Bleeding and bruising

Now Will and Rebecca, of West Norwood, south London, hope to donate money in Esme’s name.

They have already raised £425,000 on GoFundMe.

Rebecca said in November: “When we began fundraising we were punchy with our target to ensure we had enough for a self-funded transplant and said that whatever remained would go to the CCLG, the UK's leading kids cancer charity.

“Given how desperately poor the funding is into paediatric AML research, we feel even more strongly about this now.

“So a large chunk of the cash we have remaining (after spending some on novel drugs and supportive care) will be donated to AML research to try and spare future families the pain and anguish we have experienced.”

To donate in memory of Esme, visit her GoFundMe page here.