New Year hope of Stortford parents who couldn't bring three-year-old son home from hospital for Christmas Day
Little Jacob Taylor didn't get to meet Santa at Christmas. Worse still, he wasn't even able to spend Christmas Day at home with his family in Bishop's Stortford.
While other families with young children enjoyed all the magic of the festive season, three-year-old Jacob spent it in London's Great Ormond Street Hospital – in isolation on a specialist transplant ward where he has already spent too much of his short life.
That's because he has a life-threatening condition which is so rare that you're more likely to win the lottery than get it.
In 2019, Jacob underwent a life-saving bone marrow transplant thanks to the goodwill of a stranger.
Although he did not get to spend Christmas at home with mum and dad Emily and James as they had desperately hoped, they know he would not be here at all had it not been for a woman who joined the blood stem cell register and proved to be the perfect match.
Now their New Year hope is for more people to become blood stem cell donors.
“We can’t take Jacob to see Santa, he’s never been to a birthday party and every invitation we receive we have to decline,” Emily said.
“He’s missed out on so much, but he’s here thanks to his donor and now we’ve got to focus on building him up so he can start living his life again.”
Jacob was a happy, healthy baby until an unexplained high temperature when he was 19 months old resulted in a hospital admission and eventually the devastating diagnosis that he had haemophagocytic lymphohistiocytosis (HLH), a rare and life-threatening immune disorder that affects fewer than one in every 50,000 to 100,000 children a year.
The condition, which is usually triggered by an infection, causes the body’s white blood cells to become overactivated, leading to severe inflammation and tissue damage to the liver, spleen and bone marrow.
“You’ve got more chance of winning the lottery than getting this, it’s that rare,” Emily said.
Following diagnosis, Jacob was started on chemotherapy and steroids to suppress his immune system, meaning that for a large part of the next 10 months he was kept in isolation, with only his parents and a few other family members allowed contact with him.
During that period, he went into remission but relapsed three times. His doctors eventually concluded that a bone marrow transplant was the only hope.
Blood stem cells donated by a 50-year-old woman via the DKMS register – a German-based international bone marrow donor centre – were found to be a match and Jacob had his transplant in March 2019.
Before and after the procedure, he remained in isolation for a total of four months as first he underwent conditioning therapy to prepare his body to accept the new cells and then afterwards to rebuild his immune system.
Although he was allowed home to Stortford during the summer, Jacob is more susceptible to illness and infection, meaning he has been in and out of hospital in recent months, including having to spend his third birthday at Great Ormond Street in November.
Even when he is allowed home again after this latest stint over the festive period, Jacob’s recovery will be long and slow. For at least a year, his family will have to be extremely vigilant of who he comes into contact with and will have to avoid taking him to public places, like the supermarket.
Emily, 34, said: “It’s been tough on all of us. Family life has had to be put on hold, but he's our priority and you’ve got to do what you’ve got to do to get him through it.”
The former Topshop store manager added: “Thankfully, he’s too little to really understand what he’s missing out on, but I can’t wait for the day we can take him to soft play or he starts nursery.
“Despite everything he’s been through – all the procedures and horribleness – he's the happiest, most playful boy and he deserves to be doing all the normal things other children his age are able to do.”
Emily and James, who were due to get married in September 2018 but cancelled the wedding after Jacob fell ill, say they will be forever grateful to their son’s donor and hope Jacob’s story will inspire others to join the blood stem cell register.
Although some registers, like the better-known Anthony Nolan Trust, only accept donors aged 16 to 30, others like DKMS – which has an upper age limit of 55 – mean more people are eligible than they probably realise.
“A lot of people think they can’t do it because they’re over 30, but Jacob’s donor was 50,” said Emily.
“Although we’ve exchanged letters with her, we don’t know anything more about her other than her age and that she saved Jacob’s life. She’ll always be a part of him and in two years’ time we’ll be able to meet her, which will be amazing.
“We don’t know what her reasons were for registering, but we’ll always be so grateful that she did.
"We’ve met so many other children who are still waiting for someone to be their life-saver. You might be that person – and how incredible would that be.”
* Every 20 minutes, someone in the UK is diagnosed with a blood cancer or disorder.
* Some 2,000 people are looking for a potentially life-saving blood stem cell donor each year.
* Only about 30% of people with blood cancer find a matching donor within their family.
* To check whether you are eligible, or for more information on how to register, visit www.dkms.org.uk.
More by this authorEleanor Kent