Ken and Nicola O’Leary have three sons and live in Mountain Ash, a 25-minute drive from Cardiff. Their eldest, Ethan, is 21 in March 2025, Ashton, is 18, and Max is 16. They have been full time carers for Ashton who is severely autistic. When Max was two, he was diagnosed with leukaemia and had three years of treatment. Since then, Ken, now one of our ambassadors, has raised £150,000 for charities, including Latch, through marathons and physical challenges around the world. The couple say that they want to continue giving back to Latch because the charity was their lifeline when Max was ill.
Nicola’s story
“When we were told that Latch is a charity connected to the oncology ward at the Children’s Hospital in Cardiff, we didn’t imagine the amount of practical support that they could provide us with. It felt like they scooped us up when we were at our most vulnerable and gave us a massive hug because they were just there for us.
Our Latch support worker would stay with Max to give me a break to go the shop or to step away from the ward to breathe. They knew that our family dynamic was complex and that I needed be in the hospital on my own with Max while Ken stayed at home with our other sons.
Latch think outside the box in how they support a child and their family. A cancer diagnosis, shakes the whole family and if you are able to support the parents, they can be the best that they can be. Latch look at ways to problem solve each family’s circumstances and that is invaluable.
Getting diagnosed
Max is as strong as an ox. He was born with club feet which meant that, four days after he was born, he had to have his legs in plaster. We’d go back every week and he’d have them twisted further.
When he was 18 months, he became sickly with coughs, colds, conjunctivitis and constipation. He was breathless and bruised easily. I went back and forth to the doctors asking why he wasn’t getting better. Looking back, you can see the crumb trail leading to his diagnosis.
I took him to A&E because I thought he was having a reaction to the antibiotics he was on when his eyes became swollen. After 24 hours and blood tests, a doctor took me to a side room and told me they thought Max had leukaemia. It was like somebody pulled a plug and everything was a blur. I was in shock.
When you've just had the most devastating news, it was a terrible responsibility to have to ring someone and devastate their world. Ken couldn't speak.
Max had to have a blood transfusion because his platelets were really low and everything snowballed from there. He stayed in hospital for three weeks and started six months of chemotherapy. After that, he had spinal chemotherapy once a month and he’d be in and out of hospital over three years as he was prone to infections.
Support from Latch
We had a fantastic relationship with our Latch Social Worker, Jody. She knocked socks of the other social workers that we had dealt with through our son Ashton. Things got done quickly and it was no trouble for her to come out to our home to help us fill in forms to get government support. You aren’t in the right frame of mind to be filling in those forms and being in hospital puts a financial strain on the family.
Jody was really invested in making sure that Max was experiencing what he could out of life. He had missed out on things in his early years. Jody helped to organise for Latch to pay for Max to go to a private childminder with Ashton. We couldn't send him to a normal nursery because of all the germs.
Latch also paid for driving lessons for Ken. Quite often when Max went into hospital, he'd be in isolation for 72 hours minimum, and our family would be separated. Ken couldn't come to the hospital because he didn't drive so the driving lessons helped solve that problem.
It was the practicality of the support from Latch that blew us away. Like having access to the washing machine in the Home from Home accommodation. Or they would get rid of car parking fines when you parked anywhere in the middle of the night because you were running to hospital with your baby. And they paid for us to get our car fixed. It meant you could be there for your child without having to worry about anything else.
Hopes for the future
I felt relieved and grateful when Max’s treatment finished. I was glad it was over. I had met quite a few parents whose children had died along the way, and that was awful. I don't like to ever think that cancer would ever grace anyone that lives under this roof again.
The experience has changed us as a family. We started to work together more. Ken is more family-orientated and has found a coping strategy with his running and fundraising for Latch. Ethan, our eldest, has just done sports therapy at university, so you can see the influence of what Ken has been doing on him.
Max is carefree and has grown from strength to strength. After school, in September 2025, he has an apprenticeship in dry-lining, the boards you put up before you plaster. I do often question whether all the steroids have given him the biggest chip on his shoulder! He is an absolute whirlwind with lots of energy. I just want him to have a happy, fulfilling life.
I hope Ken can keep supporting Latch for as long as possible and, like him, I’d like to see them on the map a bit more. It would be an absolute travesty if they couldn’t continue their work because it is really vital.”
Ken’s story
“It felt surreal when I got a phone call from Nicola telling me that Max had leukaemia. I was looking after our son Ashton at home and got quite upset. You don't expect that kind of phone call or thing to happen. But it did. A moment like that changes everything.
Without Latch, I can't foresee how we would have got through that time. They provided financial support, like paying for driving lessons for me. But it was the other support they gave us that surpassed everything. They were like a family in the hospital and, to put it mildly, Latch were a lifeline. I knew they were there if we needed them.
I said to myself: ‘I’ve got to pay Latch back.’ And that’s been my aim to this day with the fundraising that I have done for them.
Marathon running
I did my first half marathon for Latch when Max was having treatment. I remember feeling emotional when I finished, that I’d accomplished it for Max. I felt proud and thought: ‘I just want to keep doing this.’
My perception on life changed when Max was diagnosed. Running helped me to cope. When you're running, you’re out having a conversation with yourself.
I used to have low self-esteem and super low confidence. I didn't have any aspiration or enjoy being me. I admit that I was quite selfish at times. I had some bad flaws.
But since all of this has happened, it's given me drive to help other families who are going to be in the same position we were. Now, everything I do is for my family and charity. Sometimes you have a lightbulb moment. For me, what happened with Max was that moment.
When Max’s treatment finished I was so relieved and have tried not to take anything for granted. I kind of put what happened to a part of my brain which doesn't get opened up.
Fundraising and being an ambassador
In April 2025, when I turn 50, I am running the Boston marathon. Then I will be one of only six people in Wales to have run the six major marathons in New York, Chicago, Boston, Berlin, London and Tokyo. I want to do the six majors twice. I’d be the only person in Wales to have done that.
I feel humble to have raised around £150,000 for different charities. As well as running, I’ve also done physical challenges, going to base camp at Everest and climbing Kilimanjaro.
It was nice that Latch asked me to be an ambassador. I think it’s because I have been fundraising for them for so long, after Max’s treatment.
Looking ahead
People say to me: ‘Why do you do what you do?’ I don't normally tell them my story. I prefer to keep my business to myself. But by sharing our story here, perhaps other parents will go on a similar journey to the one I've been on. I have had people tell me that they have fundraised because they heard what I’ve done so they wanted to test their own boundaries.
I’ve seen Latch get bigger over the years. In my eyes, the charity should be more mainstream than it is. Out of all the charities I have worked with, Latch is the pinnacle. I’d like to see them on a larger pedestal and I will continue to support them for as long as I physically can.
In terms of the future for Max, as his parents, we will guide him, to do what he wants to do.”
