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You saved our mum once, please now help her again

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Three years ago, Britain's Jewish community carried out the ultimate mitzvah, coming together to save the life of Kenton grandmother, Sharon Berger.

With a diagnosis of advanced leukaemia, Sharon's only hope was a stem-cell transplant. Thousands of people signed up as potential donors and eventually a match was found.

Since the transplant, Sharon has enjoyed life. She watched her grandson Ben grow from curious toddler, as he now prepares to start primary school, and welcomed new granddaughter Orla into the world eight months ago. She has been enjoying the simple pleasures in life, her garden, travelling, indulging loved ones with her Masterchef-style cooking and celebrating her 65th birthday. All this, courtesy of her anonymous donor, found after her children Jonni and Caroline launched a global Spit4Mum campaign.

But, two weeks ago, the family were dealt a devastating blow as a routine blood test revealed the leukaemia was back. Sharon is now in medical isolation at Hammersmith Hospital, undergoing chemotherapy.

Daughter Caroline, mother of baby Orla, is getting married this year. Now, she is planning her wedding at her mother's bedside. "We can't really set a date because we just don't know how my mum will be, but it's nice for her to be able to plan it with me."

Only weeks ago, Sharon was enjoying cuddles with baby Orla and trips to the seaside with Jonni's toddler, Ben. Now, most of her interaction with her grandchildren is via Skype, as she is at high risk of infection and all visitors have to be completely healthy.

Her devastating diagnosis came within days of NHS England announcing it would no longer routinely fund second stem-cell transplants for patients with blood disorders.

Fortunately, this cutback will not affect Sharon, but once again it falls to her family and charities the Anthony NolanTrust and DKMS (formerly known as Delete Blood Cancer), to turn her fate around.

The diagnosis was a terrible shock, but it did not stop Sharon from cooking a Friday-night feast the following day. "She seemed so well and it's amazing that we got to celebrate Orla's birth with Mum," said Caroline.

"We went out shopping; she had been away and was busier than ever. We had a big celebration for her 65th birthday and then we found out."

As Sharon was rushed to hospital, the Bergers spread the word through social media and interviews. Their cause has been tweeted about by celebrities including Bear Grylls and comedian Russell Kane.

Caroline and Jonni are urging as many people as possible to sign up as potential stem-cell donors - including a generation of 16-year-olds who were not previously eligible. Meanwhile, their father Stephen, an accountant regularly volunteers as a courier for Anthony Nolan, travelling the country to collect stem-cell donations for other patients awaiting transplants. Stephen and Sharon celebrated their Ruby wedding last year.

Caroline had worked for the Anthony Nolan Trust even before her mother's diagnosis. When working there, she set up a campaign to save the life of a man who has subsequently died. Baby Orla is partly named after him.

When the drive first started in 2013, the odds were stacked against Sharon. Not a single match could be found on any of the worldwide donor registers. The average person has a one in eight chance of finding a donor, but that ratio falls dramatically within ethnic minorities. The number of Jewish people registering as donors multiplied ten-fold during the original Spit4Mum campaign. A number of other seriously ill people also found donor matches as a result of the campaign.

Caroline is praying that her mum will be well enough to attend her wedding.

"Obviously it's very hard the second time. I guess it's like trying to win the lottery again."

Yet the family remain positive. Jonni , who works as an employee benefits tax consultant and is on the board of the Movement for Reform Judaism, says of the original campaign, "I couldn't just sit around and wait. I had to get out there and change the odds."

In response to the recent move by NHS England, he adds: "It's devastating that, at such a critical time, leukaemia patients will be denied another chance at life."

The Bergers are members of Finchley Reform Synagogue where Jonni's wife Miriam is the senior rabbi.

"I'm in awe of her," says Rabbi Miriam of her mother-in-law.

"The idea of being in isolation in hospital for weeks is horrible. But she's really committed to a future that she wants to be a part of.

"We love her and need her around. I think that gives her the strength and courage to put herself through another gruelling round of medical treatment."

Adding your name to the register of donors, be it with Anthony Nolan, DKMS or indeed any other register worldwide, is the "ultimate insurance policy", according to Jonni. He describes Sharon as a "typical Jewish mother" who is quite reserved, a trait he has inherited.

"I have become much more open as a result of Spit4Mum and I have a great network of people who not only supported us but came up with their own initiatives too," he says.

"You can save someone's life with no major inconvenience or impact on you personally. The more people who register, the greater the chance of finding a match when you - or someone close to you - needs it.

"Although she's very ill right now, mum is also very cheered and buoyed by the fact that total strangers are taking up her cause. She is extremely grateful and can never thank them enough."

"Now we are desperate to find that life-saving match again."

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