“Within a month of Rory turning two he started looking unwell – at first, we didn’t think too much of it, but then he started getting bruises on various parts of his body, including his face.

On 18 November, my husband took Rory to A&E at Kingston Hospital where they did a blood test which revealed Rory had leukaemia, at this stage we didn’t know what type.

We were in Kingston Hospital for five days, before we were transferred to St George’s where Rory started a two-week intense treatment plan. We then moved to The Royal Marsden, before we were able to continue treatment at home and at Kingston Hospital.

From the minute we received Rory’s diagnosis, Momentum was there. Hana, our Family Support Worker from the charity, was amazing at explaining things and helping us to process what was going on. Oscar and Rory received gifts from Momentum, Hana would always check in on us, and there was always someone available to talk to. It was a lonely time and my husband Dan, and I became like passing ships as we juggled looking after the boys and working.

On 29 November Rory had a lumbar puncture and at the start of the New Year in 2023, we were given the news that he was in remission. We entered the second phase of Rory’s treatment, and our lives went back to some kind of normality.

Rory started looking himself a bit more, he started playing with Oscar again – we are Irish, so we celebrated St Patrick’s Day and enjoyed playing in the garden and doing Easter Egg hunts that Spring.

In May that year, Rory started the delayed intensification phase of his treatment which was mainly made up of IV chemo at the Marsden. We were told it could be tough for Rory and all of us, with the severe side effects he could experience. I would occasionally take Rory to the park, and he was able to enjoy the playground when it was quiet and there weren’t any other children around.

After one of his chemo sessions in the middle of May, I noticed Rory wasn’t looking right. We took his temperature, which was extremely high, so I took him straight back to hospital. He was usually a daddy’s boy, but this time he just wanted me. His temperature kept spiking, and Rory was in hospital for 10 days with glandular fever. 

After 24 hours of being home from hospital, Rory developed another temperature, which just wouldn’t go away. We took him back to hospital where he stayed for weeks. He wanted to be outside and would get terribly upset every time I left his room. On our wedding anniversary we brought Oscar to the hospital, but Rory had a big seizure, which was closely followed by another one. We were transferred to ICU at St George’s, but Rory kept having seizures which the medical team couldn’t get under control. On the 20th of June Rory had a brain bleed, and he was rushed in for emergency brain surgery and was then in a coma. On 30 June 2023, we took Rory home and he passed away in his bed.

Rory was desperate to go home, and it was important to us as a family that we were able to do that for him. To this day, we still don’t know what happened and why he died, we are still trying to get to the bottom of it.

We are catholic and go to church every week – at times I have questioned my faith and have filled a lot of my time reading faith books to try and make sense of what has happened and why it happened to our family.

I decided I wanted to do a spiritual challenge in memory of Rory and my dad and in June this year, my mother, sister and sister-in-law joined me on a pilgrimage walk to Croagh Patrick, Ireland’s Holy Mountain.

We flew out to Ireland on 20 June, two years to the day since Rory had the bleed on his brain. We had to work as a team to climb the mountain – it took four hours to get up to the top and three hours to come back down. We all slipped and fell at various times, and it was a very hot day, but our priority was keeping my 79-year-old mum safe.

It meant a lot to all of us to reach the top – we prayed for Rory, dad and all the other children and adults we knew that have passed in the last two years, and we left pebbles in their memory, including the crocodile in a helicopter pebble painted for us by a Momentum volunteer called John.

We have a field behind our house, and Rory became obsessed that there were crocodiles there. We also had lots of helicopters flying over the house, which Rory loved telling us about. Now, whenever we hear a helicopter or see a crocodile on TV, it makes us think of Rory. Momentum gave an identical pebble to my other son, Oscar, which is a special memory for us to keep. We also have pebbles of dinosaurs that Momentum painted for the boys when they were younger.

The pebbles in my bag were like the weight of grief on my shoulders. There was a church at the top of the mountain we climbed, and it was the closest to heaven I thought we could get. When we reached the top, we could see all the Aran islands in the distance. Many people do pilgrimage walks bare feet as a way of paying penance, so I took off my shoes for the last part – it was painful! We also brought some stones down from the top of the mountain, which we painted and put on Rory’s grave.

We all wore t-shirts with Rory’s face on them, which were designed and printed by friend I had made when I was pregnant with the boys. Lots of people we passed were asking about Rory and it felt good to be able to talk about him.

Since Rory’s passing, we have been supported by Momentum’s bereavement team, Echoes. We have attended a pumpkin parade at Garson’s Farm and have been to London Zoo with other families who have lost their children. Oscar loves socialising with other children, so the Echoes events mean a lot. There are events specifically for parents too, and I know it is helpful for us to do things separately, giving my husband and I the opportunity to talk about Rory in our own way, if we feel we want to.

We talk to Oscar about Rory every single day. Oscar knows Rory has died and he visits his grave. The boys’ playroom is full of photos of the two of them and Oscar is always asking questions about Rory. He knows Rory’s favourite colour was green, and he is starting to understand a little about religion, he even asked me ‘if we pray to Mary, will she bring Rory back?’

We have done several sports challenges to raise money for the charities that have helped us – my husband Dan has done two cycling events, and a friend has completed a run. Together, they have raised £15,000.”

You can find out more about our bereavement support service, Echoes, here