But when he was two… a miracle. Baker was started on a drug that had recently come onto the market, which is known in the UK as Kaftrio. It has been a game-changer for Baker and many other CF patients.
Michael Winehouse, a distant cousin of singer Amy, started taking Kaftrio when he was 34. By now he had reached a point where CF was badly impacting his daily life. “Every morning I’d wake up and I would cough for about an hour till I was sick. I was constantly out of breath, I was exhausted, regularly having chest infections,” he recalls. Michael would struggle to get through a working week, barely having the strength to play with his young son. But worst of all, he knew his time was limited. “I think you get into a place where you’re kind of staring into an abyss of inevitability, of what’s on the horizon”, he says. Many of the other children he had made friends with on regular hospital admissions as he was growing up died of CF.
A charity fundraiser who also sits on the board of the Amy Winehouse Foundation and is a trustee of the Jewish Blind and Disabled, Michael says that the drug has made an astonishing difference. “I take Kaftrio in the morning, and apart from regular hospital check-ups, there’s little sign of CF in our lives.”
For 90 per cent of CF patients, Kaftrio is transformational, but it doesn’t help everybody. That means sufferers have been rather cruelly divided into those who respond and those who don’t. Professor Batsheva Kerem of the Hebrew University in Jerusalem was one of the team that first identified the genetic mutations that cause CF. She tells me that there are 800 different CF mutations and patients from Ashkenazi backgrounds tend to have the W1282X “nonsense” mutation that does not respond to Kaftrio.
Emily Kramer-Golinkoff is one of those. Now aged 40 and with 30 per cent lung function remaining, she spends between four and five hours daily on life-saving treatments. But she hasn’t let her declining health prevent her fighting for the survival of all CF patients. In 2011 along with a group of family and friends, Emily set up a charity based at her home town of Merion Station just outside Philadelphia in the US state Pennsylvania. Emily’s Entourage has become a major force in the worldwide research into new treatments for CF, having raised more than $15 million (£11.95 million) and secured over $52.3million in follow-on funding.
She told me: “Seeing 90 per cent of the CF community get a second lease on life from these game-changing new treatments has been crazy. I’ve seen how it has allowed them to get back to living – go to graduate school, resume or begin careers, start families, travel the world, and believe in a future they never thought they’d have.
“I just want it too – more than anything. I want it for myself but most of all, I want it for everyone like me in the final 10 per cent who is still contending with this horrific, killer disease that CF has always been and who so desperately deserves the chance to dream big and live free, unconstrained by the horrors of CF.”
The charity has assembled a group of specialists including Professor Kerem, who are focused on developing therapies that could help the remaining ten per cent of patients. She says that several promising options are being explored. “I would like to emphasise the optimistic side. We don’t have anything in hand yet, but we do have avenues. We have ideas, we have missions.”
It could still be a few years before a viable drug is developed and Emily knows that time is not on her side. Despite that, she too is optimistic: “To have numerous trials in different therapeutic areas gives me immense hope.”
If you or your family carry the W1282X “nonsense” mutuation for cystic fibrosis, please contact: gkoppel@thejc.com. emilysentourage.org; cysticfibrosis.org.uk
Maternity workers launch Jewish information source
A new source of information about Jewish birth practices and customs was launched this month.
Produced by a group of maternity workers, it was prompted by an upsurge in radical pro-Palestinian advocacy encountered within the profession since October 7.
[Missing Credit]
Midwife Laura Godfrey-Isaacs says the sector has felt very hostile, with many social-media posts repeating rhetoric around genocide. “There’s been a lot of antisemitism in the birth world – much of it based around a blood libel, the idea that Israel is directly targeting mothers and babies, and that’s obviously exercised our community a lot, because that’s our prime focus, looking after mums and babies,” she says. After forming a support group, members wanted something positive to emerge, and the outcome was Shifrah UK, named after the biblical midwife. Godfrey-Isaacs hopes the organisation’s new website will help to counter both the antisemitism and ignorance that are experienced.
New website: Laura Godfrey-Isaacs[Missing Credit]
“We’ll be providing information about Jewish birth practices, circumcision, festivals, Shabbat, dietary laws, issues around touch,” she adds. The information is aimed at medical professionals but also the informal sector of doulas, breastfeeding supporters and antenatal instructors.
The Shifrah UK website will offer a directory of Jewish organisations that support families through birth as well as providing access to a network of professionals.
It will use examples of mothers, partners and families to illustrate the wide spectrum of Jewish observance and tradition. And it will also outline some of the common antisemitic tropes.
In addition, Shifrah UK is planning to provide much-needed training, says Godfrey-Isaacs.
“As a midwife I have mandatory training around equality, diversity and inclusion, so we’ll have training there about, racism, LGBT rights, gender – but there’s nothing about Jews or Jewish practices.”
Shifrah.org.uk
Baker with mum and dad Jon and Caroline[Missing Credit]