'He missed out on a lot of things': Ezra’s story

“Ezra missed out on a lot of things because he was ill,” Merley says. “His first day at school, learning to ride a bike alongside his sister Genesis, his fifth birthday party."

Until August 2022, Ezra was an active four-year-old who enjoyed going to nursery and spending time with his family.

But towards the end of the summer holidays, Merley noticed he didn’t seem himself. He lost his appetite and looked paler than usual.

"He was complaining about shortness of breath, and exertion after running,” Merley says. “In the park he would say, ‘Mummy I’m tired, can you carry me?’. That did not seem right to me.”

Merley took Ezra for blood tests, but just walking from the car to the surgery seemed to be a struggle for her son. A decision was made to take him straight to A&E.

At A&E, Merley’s fears that something was seriously wrong were confirmed. Tests showed Ezra's haemoglobin levels were extremely low, and he was rushed to the major trauma centre.

“He had a blood transfusion that evening. They were querying leukaemia and other things, and they were telling me that they had to admit us onto the ward.

“I knew that something wasn’t right, but at the same time I didn’t want to accept that he had cancer, because obviously it is not something that you want to hear.”

Once they arrived on the ward, aplastic anaemia was mentioned as a possibility.

Also called bone marrow failure, this is a serious condition where the bone marrow and stem cells don’t produce enough blood cells.

“I understood that, in order to ascertain that’s what it was, we had to go to Great Ormond Street,” Merley explains.

In the early hours of the morning, Ezra was rushed to GOSH.

“I was quite relieved when we arrived,” Merley says. “It sounds like a cliché, but I knew I was in the right place. As a nurse, I know the goodness that has come out of Great Ormond Street and know it’s one of the best children’s hospitals in the world.”

At GOSH Ezra had a bone marrow biopsy, which confirmed he had aplastic anaemia.

For the first few weeks and months following his diagnosis, Merley felt like a deer in the headlights. But she says Ezra’s consultant and team at GOSH were “amazing”.

“They said, ‘We are here to support you. We will teach you what you need to do regarding his medication, to know what it’s like to have aplastic anaemia’. That for me was a good turning point, where I felt that I wasn’t left out. I felt informed.”

In September 2022, Ezra started immunosuppressive therapy. This coincided with his fifth birthday, which he and Merley spent at GOSH.

“The treatment went quite well, considering,” Merley says. “Obviously Ezra didn’t like it. But the GOSH staff were astonished at how calm and receptive he was to it, and how understanding of all the medication he was on. I said it helps that I’m able to let him know what is going to happen before it actually happens.”

When Ezra was discharged, Merley had to make sure she could give him all the medication he needed at home.

“He had a lot, which was a bit of a shock, but I was able to find a way of administering them to him at the times specified,” she says. “We had to find a routine for him.”

During this time, Ezra had follow-up appointments at his local hospital and the community team visited him at home to check in.

Merley had hoped Ezra would one day have a successful bone marrow transplant, but first a donor had to be found. In December 2022, Ezra spent Christmas at GOSH because he had an infection. During his stay, a bone marrow match was found in the US. This meant his stay in hospital was prolonged – to prepare for the transplant.

The transplant took place in February 2023, and it went well.

“There was such a big lead up, we were really excited, and then it was just like a blood transfusion!” Merley recalls. “We never met the donor or got to know who it was. Ezra was in isolation for a long time to protect him from infection, and it was like being in lockdown again. It was challenging, but we got through it.

“Ezra was eventually discharged in March 2023; it was really great to be home. He slowly started getting better.”

“The staff at GOSH are lifesavers, I don’t really know how to put it into words – they are a beacon of hope,” Merley says. "Our social worker was amazing, she referred us to all the services we needed. Physically and emotionally, GOSH was there for us.”

The hospital’s Play team, funded by GOSH Charity, played a big part in Ezra’s time at GOSH.

“They are an amazing group of people,” Merley says. “They encourage children to play, to learn, to do new things. At the time Ezra was diagnosed he was due to start reception class but couldn’t, so to do those things was really the highlight of his journey.

“GOSH is very child-centred, and all the staff always brought out the fun side of everything. They made Ezra forget about the serious stuff and allowed him to have fun regardless.

“They encouraged his creativity, helped with his education and nurtured his abilities, so he was able to have his childhood in hospital.”

Today, Ezra has monthly check-ups at GOSH and is doing well.

“He could always relapse, but it’s been good so far – so I can only hope it stays that way,” Merley says.

“We spend much less time at the hospital now, we are living with a bit of normality.”

And now Ezra’s energy levels have returned, he’s back to enjoying some of his favourite things.

“He loves to go and run about in the park. He enjoys computer games and YouTube and making art with his sister Genesis.”

Ezra is also enjoying being back at school.

“He’s started going for two hours a day. He’s in Year 1, he loves it – he doesn’t want to come home!

“He will be seven in September, and we are hoping he will be able to go to school full-time by then. Otherwise, he wants to go on holiday – to Disneyworld like all the kids!”

Help give seriously ill children like Ezra childhoods that are fuller, funner and longer.