He has a condition so rare his doctors had never heard of it – but now there's hope for baby Leo after a bone marrow donor was found in record time By Nici de Wet

News24

08-05-2025

Today.
Meet the tiny patient fighting an enormous battle • How JFK's grandson is making his mark in a topsy-turvy political world • Prince Harry's loneliness and heartache as his father continues to ice him out
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A miracle match
IMAGINE your busy baby cooped up in a cot for six weeks with only a few toys, medical staff and Mom and Dad around to entertain him.
That's the reality Tarryn and Andrew Parker of Cape Town are facing as their 10-month-old son prepares to undergo a life-saving stem cell transplant.
Little Leo Parker's story has captivated hearts around the world after his search for a donor went viral in March.
He was born with MECOM-associated syndrome – a rare, life-threatening genetic disorder that stops bone marrow from producing red and white blood cells as well as platelets.
There are only 23 recorded cases in the world and Leo is the first known case in SA, Andrew says.
'How I explain it is that his bone marrow factory is broken, which means he has zero immunity.'
Red blood cells carry oxygen around the body while white cells are a vital part of the immune system. Platelets help with clotting and prevent bleeding. Without these life-sustaining properties, Leo has had to rely on regular platelet and blood transfusions to survive.
'He's had 24 transfusions since the beginning of October 2024,' Tarryn says.
Now, in what his parents have called a miracle, he's been given a chance at a normal life after a match was found.
'We got the email on Easter Monday,' says Andrew (41), an estate agent. 'I told Tarryn and we were both in disbelief.'
But things won't be easy.
'We're probably facing the hardest part right now,' says Tarryn (41), an aesthetics doctor.
Leo's transplant, set to take place in mid-May, requires the insertion of a Hickman line, a tube placed under the skin of his chest and into a large vein leading to his heart. This is attached to a bag of his donor's stem cells.
'The whole process will probably take a few hours,' Tarryn says.
Before the procedure Leo will have chemotherapy to rid his body of his own faulty bone marrow cells. The treatment will be hard on his body but a 'clean slate' is needed for the new marrow to engraft.
During this process he'll be confined to a cot in a sterile hospital room for six weeks.
In June Leo will be sent home where his family will face a nailbiting wait to see if the transplant was a success.
'It usually takes three or four months, or until you reach day 100 – the day considered safe to see whether the stem cells have completely grafted,' Andrew says.
Leo will be on anti-rejection medication and the family will isolate at home to ensure no outside germs are brought in.
Both parents have had to stop working for a while. 'We'll probably only go back after six months, or maybe longer,' Tarryn says. 'We both have people-facing jobs, so we had to give them up. The biggest risk to Leo is infection.'
THE name Leo means 'brave-hearted' and so far he's living up to it. 'He's a very happy, busy baby,' Andrew says. 'When he's at home he loves to play with his eight-year-old brother, Max, or the family golden retriever, Harrison.'
Right now their emotions are a mix of hope and fear. Tarryn recently visited the unit where Leo will have his procedure and it was a shock, she says.
'It was just so cold, so sterile and the reality of Leo being there for six weeks hit home.'
But it's worth it to give their baby boy the chance of a normal life, Andrew says. 'It's not like cancer, there's no remission. They call the day you have a transplant 're-birth day'. It's basically the first day of the rest of your life.'
Leo's donor was found with the assistance of the Deutsche Knochenmarkspenderdatei or DKMS Africa, formerly known as The Sunflower Fund, an international non-profit organisation dedicated to fighting blood disorders.
'Leo was swabbed in January and we got a match at the end of April,' Tarryn says. 'It was relatively quick – some people wait years.'
They don't know any details about the donor except that they are also from SA. 'Donors remain anonymous to protect their privacy and dignity,' she adds.
Andrew believes he might have passed on the condition to his son.
He suffers from bilateral hearing loss, radioulnar synostosis (abnormal connection of the lower arm bones) and syndactyly (webbed fingers) – three symptoms of MECOM that Leo also has.
The disorder can present differently, but it typically affects the heart, kidney, bone marrow, hearing and hands and arms, as well as causing an inability to turn the arm fully.
'Andrew is a sporty, clever, normal guy – he never thought to get tested,' Tarryn says. In December however, inspired by his son, he had a cochlear implant.
'I'd always just put it off and wore hearing aids. But with the implant you can get virtually 70% of your hearing back.'
He's looking at genetic testing for MECOM but doesn't appear to have the bone marrow issue.
'I'd be sick all the time if I did,' he says.
WHEN Tarryn was pregnant with Leo, doctors picked up a mild heart condition in the foetus but told her it wasn't cause for alarm.
But things took a dramatic turn when she went into labour six weeks early. Leo was rushed to the ICU with breathing difficulties and tests revealed he had low blood platelets.
'That was the first sign something may be wrong,' Tarryn says.
He was discharged after 18 days and his parents were told to bring him in regularly for a platelet count. However, things quickly deteriorated.
'His platelets plummeted and then his red and white blood cell counts started going down until they reached zero, which meant he needed regular transfusions to survive.'
Doctors battled to put a name to his condition. 'Because MECOM is so rare and the world of medicine is so vast, they literally didn't know of it,' Tarryn says.
She decided to throw herself into research and spent weeks trawling the internet – until one night she found what she was looking for.
'What I read sounded exactly like what Leo was experiencing. I circled it and WhatsApped it to our paediatrician. The next day she said, 'Excellent research'.'
Leo had genetic testing, which confirmed MECOM syndrome. His parents are now trying to get his weight up from 7,9kg, one kilo less than his ideal weight.
'Because he's had so many gastro-intestinal infections his gut is constantly inflamed and he struggles to eat,' Tarryn says. 'He's on a special formula to keep his kilojoules up.'
They are grateful for the support they've received and hope their story will inspire others.
'Never give up, and share the load,' Tarryn says. 'We're a team – if one needs to sleep at the hospital, the other holds down the fort at home.'
She and Andrew hope the transplant will mean no more needles for Leo. 'He's still little but he knows when he goes into hospital and he knows needles hurt. But he's always so brave.'
Today.
Jack Kennedy: the pressure of his family name and his determination to make his own way in the world
JFK's legacy lives on
Compiled by Jane Vorster
WITH his chiselled jawline, shock of dark hair and camera-ready smile, there's no doubt about it – he's a Kennedy.
As the only grandson of former president John F Kennedy, it was inevitable that Jack Schlossberg would draw a lot of attention – and the fact that he looks so much like JFK's handsome son, John Kennedy Jnr, who died tragically in a plane crash in 1999, only adds to his appeal.
And like other members of the fam-ous family, Jack (32), the son of Caroline Kennedy (67) – JFK and Jackie Kennedy Onassis' only surviving child – is blessed with natural charisma and loves being in the spotlight.
His Instagram and X accounts have become must-follow destinations for those fascinated by the intersection of American political royalty and millennial outspokenness.
One day he's posing shirtless in workout videos, the next he's launching critiques of political figures – including, most controversially, members of his own extended family.
Jack has made no secret of the fact he's horrified by the outspoken devotion his mom's cousin, Robert F Kennedy Jnr, bestows on President Donald Trump.
The family have always been staunch supporters of the Democratic Party so it was a shock when Robert (71) – the son of Robert F Kennedy who was assassinated in 1968 during his own run for president – threw his weight behind the Republicans when he abandoned his run for the presidency.
Since Trump appointed Robert Jnr his secretary of health, Jack has become even more vocal on social media about how disgusted he is by his relative's politics.
In a scathing series of posts earlier this year, Jack called him a 'liar' and a 'guru shaman', taking particular issue with Robert's views on abortion, chronic diseases and his belief that childhood vaccines trigger autism.
'My family has always stood for science, for truth, for moving forward,' Jack declared in one heated video. 'Using our name to spread misinformation isn't just wrong – it's a betrayal of everything we've built.'
In April he threw down the gauntlet in another video tirade.
'RFK Jnr . . . I have got a challenge for you,' he said. 'Me and you, one-on-one, locked in a room, we hash this out. Nobody comes out until one of us has autism. What do you say?'
The feud marks a dramatic departure from the way the family have traditionally handled disagreements.
'The Kennedys were always known for their dignity in public,' says political commentator Eleanor Hayes. 'There was this unspoken code – you might dis-agree fiercely in private, but you maintained a certain decorum before the cameras. Jack's throwing that playbook out the window.'
AS A three-year-old Jack endeared himself to millions when he served as ring bearer at JFK Jnr and Carolyn Bessette's 1996 wedding.
But other than this, his mom and father Edwin Schlossberg, a museum curator and author, largely kept Jack – whose full name is John Bouvier Kennedy Schlossberg – and his sisters, Rose (36) and Tatiana (35), out of the spotlight.
But behind the scenes, Jack, who grew up in New York, was developing a keen interest in politics.
In high school he was a committed member of the Young Democrats club and helped canvass for Barack Obama's presidential campaign. When he was in Grade 8 he co-founded ReLight New York, a non-profit organisation that installed energy-efficient lightbulbs in low-income households.
After graduating from Yale University in 2015 with a degree in history, he went to Harvard to do a law degree and an MBA.
After passing his bar exam, he had a brief stint working as a political correspondent at Vogue magazine ahead of the 2024 US election.
'I am inspired by my family's legacy of public service,' he said at the time. 'I take that very seriously and I want to contribute in my own way. I have big dreams but I also know that I'm trying to make a positive impact today.'
Growing up as a bearer of America's most mythologised political surname has shaped Jack's world view in complex ways, insiders say.
In interviews he describes his grandfather, who was assassinated in 1963, as his hero.
'The first thing I ever got really nerdy about was him.'
But being a Kennedy also presents challenges.
'You grow up with this incredible privilege but also this weight of expectation,' he says. 'Everyone's waiting to see if you'll run for office, if you'll get in trouble, if you'll live up to the legacy or crash and burn.'
The comparisons to his uncle JFK Jnr, who served as editor of political magazine George before his death, have followed Jack all his life. Beyond the physical resemblance that's inspired countless side-by-side photo compilations, friends say he shares his uncle's easy charm and humour.
'They both have this quality of being completely comfortable in their own skin,' an insider says. 'John had that magical ability to make everyone feel special when he spoke to them, and Jack has that same gift.'
Despite this, Jack, who had a cameo role in the eighth season finale of Blue Bloods in 2018, has been careful not to position himself as his uncle's successor.
'I respect his memory enormously but I'm walking my own path.'
THAT path has increasingly involved forays into television and digital media.
In August 2024 Jack delivered a widely praised speech at the Democratic National Convention and he recently announced plans to launch a live news programme.
Meanwhile, he continues to stir up controversy with his social media posts.
'The internet is a place where it's difficult to break through,' he says. 'Especially if you're not saying something that's controversial. I use my judgement to make posts that I think are funny or silly but have a purpose.'
One subject he does shy away from is his love life. For several years he was involved with fitness influencer Krissy Jones but kept their relationship under the radar. They broke up last year and there hasn't been any sign of anyone new in his life – apart from his dog.
Meanwhile he seems determined to rewrite the rules, whether that means a future in politics or media. And one thing seems certain – he won't be doing it quietly.
Today.
An embittered Prince Harry has revealed the extent of the rift with his father – and some believe Charles should reach out to his lonely son now
'He won't speak to me'
Compiled by Nicola Whitfield
IT'S dawn in Montecito and a TV crew are setting up in a manicured home not far from the one where the prodigal prince lives with his family.
Keep the doors closed, the crew are told – the screaming peacocks on the lawns will wander if they get the chance.
Harry arrives in a dark jacket and open-necked shirt and introduces himself, shaking hands with Nada Tawfik, the BBC's New York-based anchor and correspondent who'll be interviewing him.
The meeting has been organised by Meredith Maines, chief of communications for Harry and Meghan's Archewell Foundation.
Nada has been told to expect 10 minutes with the duke – in the end he speaks for about half an hour.
And the content he delivered is up there with other gobsmacking royal interviews aired by the BBC.
Princess Diana made her jaw-dropping marriage revelations on the corporation's Panorama show in 1995. Prince Andrew shot himself royally in the foot when he tried to clear his name in a sit-down with the broadcaster's Emily Maitlis in 2019.
Now it's Harry's words that are reverberating around the world – and what he said has exposed first-hand the extent of the chasm in the royal family.
The catalyst for the interview was the blow Harry received just hours before – his three-year battle over his right to taxpayer-funded police security in the UK had reached its end.
He lost – and he's now liable for £1,5 million (R37,5m) in legal fees. But money isn't at the heart of it, although for Harry and Meghan, still trying to find their silver bullet in the US, the bill will be a setback.
At the centre is Harry's heartbreak, loneliness, homesickness, even regret. His father refuses to speak to him. His family have turned their back on him.
He'd love to reconcile but there's nothing but silence, he says. And the land he grew up in and still loves has become a no-go zone.
'Harry seemed wounded,' Sean Coughlan, the BBC's royal corres­pondent, says. 'When he spoke of reconciliation it seemed like a cry from the heart.'
As the fallout continued, opinions flew. Harry has created a monster of his own making, some said – he came across as 'brattish' and 'selfish' in the interview and heaped stress on his cancer-stricken father and the royal family, who were head down preparing for the 80th anniversary of Victory in Europe (VE) Day.
Others have taken a more sympathetic view.
The duke, who fears he may never see his father again, has extended an olive branch and the only person who can fix things is Charles himself.
'Many of us are thinking, well, if a king cannot help his son, what power, what compassion, does he really possess?' Daily Mail columnist Liz Jones says.
Harry's legal battle
The court case has its roots in Megxit. When Harry and Meghan walked away from official royal life and duties in 2020, the Protection of Royalty and Public Figures committee (Ravec) decided they'd forfeited their rights to security afforded to members of the royal family.
Because Harry would be an 'infrequent visitor' to the UK his security needs would be assessed on a case-by-case basis, the committee said.
But the duke's legal team said Ravec didn't properly assess the threats he'd face – Al-Qaeda had called for Harry to be killed and he and Meghan were 'involved in a dangerous car pursuit with paparazzi in New York City [in 2023]', his lawyers said.
Harry does get security in the UK but it isn't automatic and he has to give plenty of notice when he intends to visit, which he claimed would place him and his family at even greater risk. Harry lost the case last year but appealed – however the judge, Sir Geoffrey Vos, recently upheld the decision, leaving the duke devastated.
What the judge said
In his judgement Sir Geoffrey Vos said it was clear Harry felt he'd been 'badly treated' but an 'unintended consequence' of his decision to leave the UK was a lower level of security. Harry felt he'd been singled out for 'especially inferior treatment' compared to other members of the royal family and visiting VIPs, the judge added, and had a 'lower level of security provided to him throughout his adult life', despite his military service in Afghanistan placing him at 'particular risk'.
Harry's arguments were 'powerful and moving' but his sense of grievance didn't translate to a legal argument. There was also no recent precedent, Vos said.
The last time a royal left the family to live abroad was when King Edward, Queen Elizabeth's uncle, abdicated in 1936 to marry divorced US socialite Wallis Simpson and settle in France.
'The security committee's decisions were an understandable, and perhaps predictable, reaction to [Harry] having stepped back from royal duties and having left the UK to live principally overseas,' the judge said.
After the decision, Buckingham Palace issued a one-sentence statement. 'All of these issues would have been examined repeatedly and meticulously by the courts, with the same conclusion reached on each occasion.'
What Harry said
'I'm pretty gutted about the decision,' he told the BBC. 'We thought it was going to go our way but it certainly proved there was no way to win this through the courts.'
And for Harry it was deeply personal. He learnt the 'shocking truth' that the royal household was involved with Protection of Royalty and Public Figures (Ravec), although the palace has said the household was 'merely present to help inform the chair of the committee'.
'It reveals a sad truth,' Harry stressed. 'My hands are tied in seeking legal recourse against the establishment.'
He felt let down, he said. 'It was a good old-fashioned establishment stitch-up.'
Harry said he didn't ask his father – who could've changed the outcome – to intervene. 'I asked him to step out of the way and let the experts do their jobs. My treatment during the process has uncovered my worst fears.
'I'm devastated – not so much with the loss than I am about the people behind the decision, feeling as though this is okay. Is it a win for them?'
Hours after Harry faced backlash for comments on Charles' health, Meghan posted this idyllic image of the duke with their kids, Archie and Lilibet.
A relationship in ruins
Harry admitted his father won't take his calls. 'He won't speak to me because of this security stuff.'
Then he delivered the bombshell that's made the biggest headlines. 'Life is precious. I don't know how much longer my father has.'
He'd like nothing more than to reconcile with the king, who is still having weekly cancer treatment, but he believes his hands are tied.
'I can't see a world in which I would be bringing my wife and children back to the UK at this point,' he said. 'And the things they are going to miss is, well, everything.
'You know, I love my country, I always have done, despite what some people in that country have done. I miss the UK, of course I do. And I think that it's really quite sad that I won't be able to show my children my homeland.'
Yet Harry conceded that reconciliation might be a pipe dream, especially in the light of his no-holds-barred auto­biography, Spare.
'Of course, some members of my family will never forgive me for writing a book. Of course, they will never forgive me for a lot of things. But I would love reconciliation with my family.
'There is no point in continuing to fight anymore.'
The king at a crossroad
Charles hasn't seen his son since February last year, when Harry flew to London after his dad called to tell him he had cancer.
That meeting was brief and, much to Harry's reported chagrin, was also attended by Camilla, the stepmother he has such complicated feelings about.
Harry tried to see his dad three months later when he was in the UK for the 10th anniversary of the Invictus Games but Charles declined, saying he was too busy.
Since then, zero. 'There is nothing there,' a royal insider told the Times of London of the father-son relationship. 'There is nothing left.'
Another insider says Charles in a difficult situation. 'His son suing the king's government in the king's court over a decision taken by a committee who decide on the king's security makes it tricky for Charles.'
Yet other commentators believe the king should put his official position aside and reach out to his son – for his own good and the good of his heir, Prince William.
'If the late queen were still alive she would be the bigger person and embrace Harry,' one says. 'He is blood, he is family. Charles and William, reconcile with Harry or I fear the British people will turn against you.'
But it's complicated...
Royal historian Dr Tessa Dunlop told Sky News Harry's court battle was a case of him wanting his cake and eating it too.
'There really was no legal argument – you aren't entitled to security if you are no longer a working royal. Harry says he wants reconciliation but he still parks blame at his father's feet and as long as he refuses to take accountability there will be no reconciliation.'
Harry has asked the UK prime minister, Keir Starmer, to intervene in the security matter but Dunlop says 'it's not the way things work'.
'He's clunking around with the privilege of his birth and he isn't doing himself any favours.'
Harry has many admirable qualities, she adds. 'People who have lost sons and daughters in war speak about how easy and comforting he was to them when he met them. In a way he's a real loss to the royal family – but the further away he walks from his impressive self, the further away he walks from his family.'
Royal expert Robert Jobson agrees. 'Harry wants the privilege of royalty without the responsibility. The court has reminded him it doesn't work like that.'
Royal author Robert Hardman says Harry's perception that his father doesn't care about his safety and could step in to change his security status is 'far from the truth'.
'The king is unable to speak to his son about the legal dispute because he's the fountain of justice in the UK and any intervention from the monarch may have been deemed improper. There can be no reconciliation until Harry stops litigation and stops speaking publicly about his feud with his family.'
until tomorrow.
Today's images come from, Instagram/@Jackschlossberg, Gallo Images/Alamy, Instagram/Meghan, ©BBC, or are supplied.
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