Boy whose brave smile captured your hearts
Thanks to your generosity and a Mail reader who gave £100,000, little Zac will get life-saving treatment for his rare leukaemia. Now be moved to tears by the strength of his family’s love – and his own awesome courage . . .
FOUR-yeaR-Old Zac Oliver does not have a clue how desperately ill he is. His mother, Hannah OliverWillets, has told her little boy, who is suffering with an incredibly rare form of leukaemia, only that he’s ‘got poorly blood’.
She doesn’t want him to know about the nights she has lain awake fearing she might lose him, or how his father Mark Garbett has worried himself half sick over the £500,000 they need to raise to fund pioneering treatment in the U.S. Without it, Zac is unlikely to reach his sixth birthday.
‘The nights have been the worst,’ says Mark, a heating engineer who separated from Hannah before Zac’s birth, but remains very much part of his life.
‘you lay there with all these thoughts in your mind. Where are we going to find the money? How will we find it in time for him to be well enough to have the treatment? What else can we do? There has to be a way. We can’t let him die.’ But now...’ The sentence ends in a tentative smile.
Four days ago, Hannah received a phone call from a mystery donor who wanted to give the final £100,000 they need to fly Zac to the States. The man, who wishes to remain anonymous, was moved to help them after reading in the Mail about their Herculean fund-raising efforts, which have seen the fund for Zac’s treatment grow to a staggering £400,000 in little more than a month.
Hannah says: ‘When I answered the phone, someone said: “Is it correct that you have raised £400,000 and need another £100,000 to get your son the treatment he needs?”
‘I said: “yes, who is this?” They said: “It doesn’t matter who I am. I just want you to start arranging flights because I’m going to make it up to £500,000. This is not a prank, so pack your bags.” ‘literally within hours the money was deposited.’ Unable to reach Mark on his mobile, Hannah, 33, drove the short distance to his home. ‘I was on my way out as she was coming up the drive,’ says Mark, 37. ‘She was flashing her lights, the windscreen wipers were going — everything. She kept saying: “We’ve got the money. We’ve got it.” She was beaming.’
He lOOkS fondly at Hannah. ‘She’s been so strong and positive all the way through this. She’s amazing.’ They both are, as is Hannah’s husband, Wayne Willets, a plasterer with whom she has a three-year-old son, leo. When we meet, Zac’s parents are running high on the sort of purposeful love only a mother or father has for their child. you know they’d move heaven and earth to save him.
Indeed, when Zac’s oncologist at Telford’s Princess Royal Hospital presented Hannah with the grim reality of his chances of survival if he is treated in this country — less than 25 per cent — she pleaded with him to give her more hope.
‘I begged him to give me something else. I couldn’t accept that he had more chance of dying than living. He told me he couldn’t.
‘That made me determined to find something better. It wasn’t because I couldn’t face it that Zac might die. I’ve already thought about that day. I’ve already thought about funeral arrangements. I’ve grieved for him.
‘I’ve done all of that because you know there’s a good chance that day will come, but you either lose yourself in that world of morbid sadness or fight. I chose to fight.’
The ‘wonderful’ people of Telford in Shropshire are supporting her in this fight with the sort of selfless community spirit that is a joy to behold. Take the small town of Broseley, a stone’s throw from the family home, where lamp-posts and shop fronts are awash with the red ribbons and posters that are part of Zac’s campaign. locals here talk of little else and are as proud as punch to do what they can for this little boy.
Such is the momentum behind Zac’s campaign that it has resonated as far afield as New Zealand, Vietnam and Saudi arabia, where people are donating to Zac’s fund, while celebrities such as dire Straits guitarist Mark knopfler, footballer Jermain defoe and Simon Cowell, who has given £50,000, are also supporting him.
‘There have been so many acts of human kindness. Not the odd one, it’s every day,’ says Hannah.
‘It’s absolutely mind-blowing. There was a cake sale on our estate the other week that raised about £250 from all these kids baking cakes. Cake sales don’t raise that sort of money.’
She is genuinely moved. ‘That’s just magic. knowing everyone’s rooting for him gives you strength. Sometimes it feels like you’re alone in your battle, but you’re not.’
Those who know and love this family began fundraising for Zac within days of him being diagnosed in May.
‘Suddenly, our world was turned upside down,’ says Hannah, whom friends rightly describe as a woman ‘with a heart of gold’.
‘Until that moment I’d think to myself some days: “God, I was just born lucky.” I had a lovely husband, a good friendship with Mark, two beautiful, healthy children, a good support network of friends and family, a career (as an occupational therapist), a nice house. We ticked all the boxes.’
The first symptom of Zac’s devastating illness was a pain in his arm. He said he’d fallen off his slide. When Hannah took him to the a&e department at the Princess Royal, doctors suspected a fracture so put his arm in a cast.
a week later, he complained he had hurt his knee. The next day, he couldn’t walk. This time Mark took him to the hospital where a doctor said there was soft tissue damage and prescribed painkillers and rest.
That night, Zac complained his other arm was hurting. Hannah also noticed, tiny blood spots beneath his eyes.
‘I did some Googling and read that the spots, which look like freckles, are called Petechiae and could be a symptom of leukaemia,’ she says.
‘The next day, a Wednesday, he was meant to go horse riding but wouldn’t eat his breakfast and didn’t want to go. He’d deteriorated rapidly in ten days. He couldn’t do anything for himself because his joints were bad.
‘It was, “Mum, can you feed
me,” . . . “Mum, can you take me to the toilet,” ... ‘Mum, can you get me a drink of water.’
‘I texted my mother and said: “I think he’s got leukaemia.” Then I thought I was just being overcautious — over the top. Mum said to follow my gut instinct.’
Hannah took Zac to the GP who, after examining him, arranged for him to be assessed at the Princess Royal. Hannah texted Mark, who joined her there. When blood tests revealed that Zac did, indeed, have leukaemia Hannah wept.
‘I was just devastated,’ she says. ‘Your world — everything — is perfect then suddenly you’ve got a kid with leukaemia. That happens to other people. It doesn’t happen to you. When I sent that text to Mum I hadn’t expected it to come true. Suddenly, it was real.
‘It didn’t make sense. I couldn’t believe it, couldn’t process it, couldn’t understand it. I was thinking: “We’ll have more tests and it won’t be real.” You cry because you’re upset, but your brain is literally going at 100 miles an hour telling you: “It can’t be right.”
‘That night, I kissed Zac more than I probably ever have in my life — you know, from head to toe — because that’s my baby, that’s my little boy.’
SHe breathes deeply to stop the tears. ‘When I told Wayne, he went quiet for a while. He had to man the fort — keep Leo safe and pretend everything was fine. That’s what we do as parents. No matter what’s going on, you protect them.
‘As a mum when your child bumps his knee you know what to do. With a cold, you know what to do. With chicken pox, you know what to do. This was a whole new world because you don’t know. I was totally beside myself. I needed to know. I needed to find out. I needed to teach myself how we were going to manage this.’
Zac was transferred to Birmingham Children’s Hospital, where he underwent a barrage of tests.
‘That was the worst week of my life,’ says Hannah. ‘It’s like torture — literally torture — and there’s nothing you can do. You have to watch people every hour, every couple of hours, torture your child in front of you and you have no power. You can’t make it better.
‘They are sticking cannulae into every hand, every foot, every joint. He had pricks in all of his fingers. It was just awful — the screaming.
‘You’re surrounded by children with no hair lying in beds being sick, children having to be hoisted up because they can’t move because of the side-effects of chemotherapy. You’re surrounded by devastation.’ Tests revealed Zac was ‘riddled’ with cancer cells. Within 48 hours he was started on chemotherapy.
‘I wouldn’t leave his side for a second,’ says Hannah. ‘Obviously, I cried a lot, so I kept telling him there were lots and lots of flies in my eyes. In the end he’d say: “Mummy, you’ve got flies in your eyes again.” I said: “Yes, those darn flies. They keep flying around.” ’
Zac is, in truth, astonishingly brave He never complains or feels sorry for himself. There is a Hickman tube (a catheter for chemotherapy) in his chest and a tube in his nose, but he doesn’t make a fuss.
The day before we meet, Zac had a lumbar puncture to remove fluid from his spinal cord to test whether the leukaemia has spread to his nervous system. ‘That would mean it’s gone to his brain, only a very few children survive that,’ says Hannah.
‘If it gets into the spinal fluid there’s very little they can do,’ says Mark. ‘All hope will be gone.’
For the first time, he looks truly despondent.
As they won’t know the results for a week, they will not think about it until then. It is how they have borne the terrible emotional rollercoaster for five months.
‘At the start, we were told he had a 80 to 90 per cent chance of survival so thought: “We can do this. He’s got leukaemia, but he’s going to be fixed,”’ says Mark. ‘It wasn’t until two weeks later they told you, was it?’
He looks at Hannah. She bites her lip and takes a deep breath.
‘I got called into the office,’ she recalls. ‘The doctor said: “We need to tell you something. He’s got a rarer type of leukaemia that’s very technical — lots of letters and numbers you probably won’t understand — we need to put him on a regimen C [a high-risk treatment].” ’
Their son was suffering with the near-haploid strain of lymphoblastic leukaemia, a condition which affects less than 0.5 per cent of childhood leukaemia sufferers worldwide. The strain is so rare that Zac’s oncologist had never encountered it before. Hannah began researching the condition.
‘Four out of five children with near-haploid die. So I became a “mumcologist”. I emailed every researcher who had ever published anything on near-haploid. I emailed the guy who runs the NHS. I emailed the leading oncologist for leukaemia. I had to know what the latest research was and what it meant for Zac.
‘The only treatment available to him here was a bone marrow transplant or chemotherapy, but the research showed children were still dying. We needed to find an alternative treatment because that wasn’t good enough.’
Hannah began to read about Car-T therapy, a revolutionary treatment which modifies the body’s immune cells to help fight the cancer cells. It increases the chances of survival from less than 25 per cent to 60 to 80 per cent.
Six weeks ago, Hannah and Mark learned their son had been accepted for a 17-week course of therapy at Philadelphia’s Children’s Hospital.
‘We asked our oncologist what he’d do in our situation,’ says Hannah. ‘He said the only reason he said he’d consider not going to Philadelphia is because he’s seen the impact and strain on families having to travel there and not having a support network.’
She says they’ll weather it. This is, after all, a family who didn’t so much as flinch when they were faced with raising £500,000.
‘Our only thought was: “If this is what we’ve got to do, we’d better get it done,” ’ says Mark.
Their generous donor, who wishes to remain anonymous, came forward after reading Zac’s story in the Mail. We in turn put him in touch with Zac’s parents.
Hannah described the benefactor as ‘absolutely amazing’, adding: ‘Some people are just born special with a desire to help others.’
MARk, beaming, says: ‘When we told Zac he was flying to America he said: “I can’t fly. I’ve only got arms and legs. I haven’t got any wings.” That night, I had my first good night’s sleep in six weeks.’
As if on cue, Zac wakes from a nap. Hannah needs to get him ready for another gruelling chemotherapy session. The plan is to leave for Philadelphia in two weeks when the cycle of treatment ends and Zac has built up his strength.
‘We’ve told Zac we had to raise lots of money for special medicine,’ she says. ‘We said: “Mummy and Daddy can’t afford it so everybody else is helping to pay so one day we can take out your Hickman tube and go swimming and go to school and do all those nice things.”
‘The fundraising will continue because we will have to pay for return flights to Philadelphia for tests over the next three years. The realism is also just beginning to hit that we’ll have to get an apartment to live there, pay for food and travel to the hospital and for Zac’s general medication.
‘That’s all been put on the back burner. We’ve just been concentrating on raising the money to make sure we get the treatment. I suppose we’ll beg, borrow — whatever if takes, we’ll do it.’
DONATIONS to Zac’s fund can be made at justgiving.com/ crowdfunding/Zac-Oliver or by texting ZACH75 £1 to 70070. Future fundraising events can be found on his Facebook page Zachariahs Fight Against Acute Lymphoblastic Leukaemia.