Noah was diagnosed with Acute Lymphoblastic Leukaemia in May 2022 when he was just two years old. The first month of treatment was extremely hard for Noah, leaving him groggy, with inflammation and spiking a temperature.
A CT scan at his local hospital found a bleed on his brain and Noah was immediately blue-lighted to the Intensive Care Unit at Great Ormond Street Hospital (GOSH), before being transferred to the oncology ward to continue chemotherapy.
Mum, Dilly said, “It was so scary to go from our local hospital to GOSH so quickly. It was during Covid, and we couldn’t leave our room or see anyone outside of medical staff.
Noah was taken for an MRI where the medical team discovered that a fungus infection had travelled from his chest to his brain causing a haemorrhage.
“Initially he seemed ok and wanted to eat, drink and sit up, but he began to deteriorate very quickly. He couldn’t move, or speak and as he was also having chemotherapy, he lost all his hair.
“Noah was on high steroids and a course of anti-fungal medication, but we soon realised it wasn’t working and another MRI revealed that the fungus had increased and he would need to have brain surgery to take a biopsy of the fungus so they could establish which medication might work. It was a terrifying time for us.”
“After the operation Noah’s condition started to improve straight away and he was transferred back to the oncology ward to continue his cancer treatment. We’d been there for about two months when a nurse excitedly told us that this brilliant charity, Spread a Smile, who were restarting their visits to the wards due to the Covid restrictions being lifted.
“We still couldn’t leave our room as Noah was so vulnerable, so one of the Spread a Smile entertainers came to the door and sang to us and did some magic. It was truly amazing – such a lifeline. From then on, we would look forward to Spread a Smile’s visits every Thursday. I would chat to Noah about what he would ask them to sing, and he would always say ‘Wheels on the bus’. We would have such fun thinking about it and then when they were with us it was so lovely – such a break from everything going on.
“In the July of 2022, one of the Play Specialists mentioned that Spread a Smile was having their annual Summer Party across the road from the hospital and that she could take us down to it. We were so looking forward to it as it was something I could do with both Noah and his twin sister Naima. Sadly, Noah wasn’t well enough to leave the hospital, but I went Naima and it was truly amazing. I cried all the way through it, but everyone was so kind and made all sorts of things for me to take back for Noah. A brilliant balloon modeller made a car for him and a flower for Naima. Up until then I’d never done anything like that without Noah – it has always been the twins together. It was so hard, but we were so well looked after and Naima loved it.
“Noah’s rehabilitation progressed well after that, and he started to regain his movement and speech again. In the Summer of 2023, we were delighted that Noah was well enough to come to the Spread a Smile Summer Party as well – in his buggy and with his NG tube. We went as a whole family, having the best time. I didn’t want any photos the previous year, but this year we had one all together as a family – Mum Dad, Noah and Naima. It really meant a lot.
“We’ve since been back another two times as a family and last year, Noah went running straight in, NG tube free, shouting ‘Party, Party!’ I’ve come to see the Summer Parties as markers of just how far Noah has come in the last few years: from not being able to move, speak or attend at all, to running in shouting. It’s been a very special part of our journey.
“One of the most wonderful things is that Spread a Smile has been there for both Noah and Naima in equal measures. The parties are so inclusive, and every child is treated the same, be it patient or sibling. It really is a beautiful thing and something we are so grateful for.
“Noah finished treatment in August 2024 but unfortunately relapsed in February 2025 just before his 5th birthday. Spread a Smile always get in touch around the twins’ birthday to see if they can organise a birthday call or session, but this year, I just didn’t feel I had the energy to do it, particularly as we were back in hospital. However, the lovely Spread a Smile team set it all up, organising a special online birthday party for them both. We did it whilst Noah was having an important procedure, and it was brilliant as it helped to distract him, making him feel so special.
“What Spread a Smile do for families is so important. As a parent, you’re just trying to hold it together, going through the unimaginable and being strong for your children. Spread a Smile give Noah and Naima time to laugh, have fun and enjoy themselves together. And when I see that, I’m also able to laugh, relax and just enjoy being with them in that moment. Even when they were just two years old, both knew who Spread a Smile was and that they bring something fun to look forward to – even in hospital.
“We’ve enjoyed so much with Spread a Smile, from the Summer Parties to entertainment in hospital, their Winter Party and online sessions. I even got a lovely hand massage this year when we were in GOSH as part of one of their Parent pamper Days. It was a rare treat for me and what’s more it happened to be my birthday! We really can’t thank Spread a Smile enough for all their love and care.”
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