Girl with ‘one in a billion’ condition meets stem cell donor who saved her life

Published

1 year ago

October 28, 2023

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The excitement of the Gardella family was palpable as they waited in the arrivals hall at Birmingham Airport for someone they’d never met before but who already meant so much to them.

Finally, they spotted a middle-aged woman wearing an oversized hoodie amongst the passengers arriving from Dusseldorf.

The family instantly recognised Dana Ernst-Behme from her WhatsApp picture and nine-year-old Sofia Gardella took the lead, eagerly approaching their guest and flinging her small arms around her neck. The hug was a long one and Ms Ernst-Behme closed her eyes as she embraced her young host.

This meeting was so special because it was the first time Ms Ernst-Behme met the girl whose life she had likely saved.

Sofia, from Mansfield, Nottinghamshire, was just two years old when her family discovered she urgently needed a stem cell transplant. She was diagnosed with Congenital Amegakaryocytic Thrombocytopenia (CAMT), a condition that is so rare doctors believe fewer than 100 people in the world have it.

CAMT causes the body to produce a dangerously low number of bone marrow cells, specifically the type needed to make platelets that clot the blood.

Sofia’s medical team scoured the Anthony Nolan stem cell register and found a good genetic match with Ms Ernst-Behme, 52, from Helpsen, Germany. She donated her stem cells from her hometown and they were immediately flown to the UK for Sofia’s life-saving treatment.

Sofia’s mum Claire Gardella said: “I actually saw the cells arrive at the hospital. I was looking out of the window and saw the courier pull up with the box.

“It looked like a bag of blood, but obviously it was a bag of magic cells. That’s what we called it when we explained it to Sofia – a bag of magic.”

Ms Ernst-Behme’s healthy stem cells replaced Sofia’s damaged ones, and she has now made a full recovery.

After five years of emails, calls and letters with Mrs Gardella, Ms Ernst-Behme decided to visit the UK for the first time and see the family whose lives she’s changed.

‘She saved my life’

Sofia said she was excited to meet her donor.

“I think it’s really important [for her to visit] because she saved my life.”

Sofia wasn’t remotely shy around Mrs Ernst-Behme. When they got home from the airport she expertly demonstrated how to play the card game Boggle.

Mrs Ernst-Behme admitted she’d known to expect Sofia’s confidence thanks to her mother’s emails.

“Claire wrote that Sofia’s a chatterbox and she said I [must have] had it in my bone marrow. But I said I’m not a chatterbox and then my husband said… I am,” she laughed.

‘We need more people to register and everyone can help maybe’

Sofia said she didn’t understand what was going on when she received her bone marrow transplant because she was too young, but now she realises a stranger donated exactly what she needed to lead a healthy, happy life. She’s very grateful.

Sofia said she now loves dancing, swimming and riding her bike – all made possible by the transplant she received.
Her mother said it was such a huge relief when they got the news the doctors had found a match for Sofia.

“Oh it’s amazing just to think that there’s somebody out there who’s willing to help us, somebody that doesn’t know us,” said Mrs Gardella.

“We need more people to register and everyone can help maybe. There’s one match all over the world,” said Mrs Ernst-Behme.

Call for donors

The Anthony Nolan charity has been helping patients for almost 50 years.

It has the UK’s biggest stem cell register, but desperately needs more people to sign up, particularly donors between the age of 16-25 years old. Donors under the age of 30 lead to better survival rates for patients but fewer and fewer are coming forward.

“It’s really simple to sign up [to the register],” said Rowena Bentley, a spokesperson for the charity.

“You receive a swab in the post and you just need to swap your cheeks and send them back to Antony Nolan. We test those for your unique genetic type and then you sit on the register ready to be a match for a patient in need.”

UK

NHS league tables and cancelled pay rises for managers among government health reforms

Published

4 hours ago

November 13, 2024

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NHS league tables and cancelled pay rises for managers among government health reforms

NHS league tables revealing failing NHS trusts and cancelled pay rises or dismissal for managers who don’t turn things around are to form part of the government’s plans to improve the health service.

Health Secretary Wes Streeting is confirming new measures he hopes will boost failing hospital trusts and encourage successful ones.

The changes form part of the Labour government’s strategy to reduce waiting lists “from 18 months to 18 weeks”.

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Health and the state of the NHS were consistently among the most important issues for voters at this year’s general election – with Labour blaming the Conservatives for “breaking” it.

As health is a devolved area, any reforms proposed in Westminster would only apply to England.

Chief among Mr Streeting’s proposals is a “league table” for NHS trusts.

An announcement from the Department for Health and Social Care said: “NHS England will carry out a no-holds-barred sweeping review of NHS performance across the entire country, with providers to be placed into a league table.

“This will be made public and regularly updated to ensure leaders, policy-makers and patients know which improvements need to be prioritised.”

It also promises to replace “persistently failing managers” – with “turn around teams” being sent in to improve trusts running sizeable deficits or offering poor service to patients.

The government says “senior managers” who fail to make progress will not be eligible for pay rises.

There will be “financial implications” for more senior figures such as chief executives if their trust does not improve.

On the flip-side, those trusts that are deemed to be “high-performing” will get “greater freedom over funding and flexibility”.

Senior leaders at these trusts will also be “rewarded”.

The government says the current system is not incentivising trusts to run a budget surplus, as they cannot benefit from it.

Mr Streeting said: “The budget showed this government prioritises the NHS, providing the investment needed to rebuild the health service.

“Today we are announcing the reforms to make sure every penny of extra investment is well spent and cuts waiting times for patients.

“There’ll be no more turning a blind eye to failure. We will drive the health service to improve, so patients get more out of it for what taxpayers put in.

“Our health service must attract top talent, be far more transparent to the public who pay for it, and run as efficiently as global businesses.

“With the combination of investment and reform, we will turn the NHS around and cut waiting times from 18 months to 18 weeks.”

Concerns from health representatives

Amanda Pritchard, the chief executive of NHS England, said: “While NHS leaders welcome accountability, it is critical that responsibility comes with the necessary support and development.

“The extensive package of reforms, developed together with government, will empower all leaders working in the NHS and it will give them the tools they need to provide the best possible services for our patients.”

Further plans on how monitoring will be published by the start of the next financial year in April 2025, the government said.

Matthew Taylor, the chief executive of the NHS Confederation – a body that represents all NHS trusts – said healthcare leaders welcome the “government’s ambition”.

However, he said he was concerned league tables and reducing pay may “strip out” the nuance of what’s going on.

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Mr Taylor said: “NHS staff are doing their very best for patients under very challenging circumstances and we do not want them feeling like they are being named and shamed.

“League tables in themselves do not lead to improvement, trusts struggling with consistent performance issues – some of which reflect contextual issues such as underlying population heath and staff shortages – need to be identified and supported in order to recover.”

UK

Princess of Wales’s annual carol concert to focus on ‘how much we need others in difficult times’

Published

4 hours ago

November 13, 2024

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Princess of Wales's annual carol concert to focus on 'how much we need others in difficult times'

The Princess of Wales will host her Christmas carol concert this year, reflecting on “how much we need each other, especially in the most difficult times of our lives”.

The service, which has become an annual festive event for Kate, will take place on the 6 December at Westminster Abbey, as part of her return to public duties after finishing her chemotherapy treatment earlier this year.

In September, the princess said her focus is “doing what I can to stay cancer-free”.

Last week, Prince William described how the past year had been “brutal” and probably “the hardest year in my life”, with his father, the King, also receiving cancer treatment.

Both the King and Kate joined other members of the Royal Family for the Remembrance Sunday service at the Cenotaph in London on Sunday.

Announcing the date of the Together At Christmas carol service, Kensington Palace said: “This year’s service provides a moment to reflect upon the importance of love and empathy, and how much we need each other, especially in the most difficult times of our lives.

“The service will shine a light on individuals from all over the UK who have shown love, kindness and empathy towards others in their communities.”

It will be the fourth time Kate has staged the carol service, which is supported by her and her husband’s Royal Foundation.

Around 1,600 people will be invited to sing carols and see musical performances by stars including Paloma Faith, Olivia Dean and Gregory Porter.

Those who have supported others, either on a personal level with friends and family or through their work or volunteering, have been nominated to attend.

The palace added that this year Kate “wanted to celebrate the many people supporting those in need – individuals who have inspired, counselled, comforted, and above all else shown that love is the greatest gift we can receive”.

The theme takes inspiration from the Christmas story, “which encourages us to consider the experiences of others and the important human need of giving and receiving empathy”.

Across the UK, 15 Together At Christmas community carol services will also be held, including at the Royal Cornwall Hospital in Truro and Blackpool Tower Circus.

The event will be filmed as part of a special programme which will air on ITV and ITVX on Christmas Eve.

UK

£10,000 fine for social media bosses who don’t remove knife adverts proposed

Published

4 hours ago

November 13, 2024

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£10,000 fine for social media bosses who don't remove knife adverts proposed

Fines of £10,000 for social media bosses who don’t remove illegal knife adverts are being considered by the government.

The proposals are part of attempts by Labour to fulfil their promise to halve knife crime levels in the next decade.

The Home Office wants to introduce the measures to stop the “unacceptable use of social media and online marketplaces to market illegal weapons and glorify violence” and ensure content is quickly removed.

Under the plans, police would be empowered to issue warnings to senior officials at online companies and demand specific adverts and content be removed – potentially within two days.

A second notice could then be given if action is not taken – with senior executives “personally liable” for a “significant fine” if nothing is done.

While the exact scale of the financial penalty has not been confirmed, a consultation suggested £10,000 for the worst offenders, according to the PA news agency.

Sir Keir Starmer previously spoke of his desire to make buying knives online harder.

In September, he hosted a meeting of a new anti-knife crime coalition including actor Idris Elba and bereaved families, among others.

Elba told the meeting: “Talk is good, but action is important.”

As well as reducing the sale of knives online, the government also wants to change the law around ninja swords.

Work is currently ongoing to decide a definition of the weapons.

It comes on the back of campaigning by Pooja Kanda, the mother of 16-year-old Ronan Kanda.

Ronan was killed in Wolverhampton by two 17-year-olds in 2022, who used a weapon purchased online under an alias and collected from a Post Office.

Home Secretary Yvette Cooper said perpetrators “must face the full force of the law” as she announced the “tough new sanctions”, adding: “The epidemic of knife crime that has grown over the last decade is devastating families and communities right across the country.

“That’s why this government has set out an unprecedented mission to halve knife crime over the next decade and today we’re taking determined action to get lethal blades off Britain’s streets.”

Commander Stephen Clayman, who leads the National Police Chiefs’ Council’s work on knife crime and is also heading a review of online sales of the weapons for the Home Office, said: “For far too long, deadly weapons have been far too easily accessible online, with content promoting their use for protection and combat rife on many platforms and seemingly little being done to remove it.

“We welcome the chance to take part in the consultation and explore the most effective means of achieving this, including using the findings of the ongoing online sales review.”