Stand by Benny

22/04/2026

We made it to Rome 🇮🇹

On Monday, Benny had his initial screening exams at the hospital. It was a busy day in a new hospital with lots of new faces and a different language. Benny found it quite tough, especially when he had his dressing changed on his new Hickman line in his chest. We were thankful that the hospital provided an interpreter for us as it was a big change and she was really helpful in explaining how things work.

As soon as we left the hospital and got Benny an ice cream he cheered right up 🍦

The plan is to extract the T Cells from his blood on Thursday. We’ll travel home for 4-6 weeks while they engineer his cells to look for Neuroblastoma cells in his body and kill them.

Thank you so much to everyone that has supported Benny in his journey so far. It feels surreal to have made it to this point and we honestly can’t express how grateful we are to everyone that has supported us. We would never have been able to access this treatment without you all.

15/04/2026

🌟 Charity Walk for an Amazing Cause 🌟

On Sunday 28th June, we’re taking part in a special charity walk in support of Neuroblastoma UK.

📍 Meet: Eusemere Car Park
⏰ Time: 8.30am start
🚶‍♀️ Distances: 10 miles or 20 miles
💷 Entry: £20 to sign up for the walk

The first 10 miles are a lovely, flat route, perfect for families.

If you’re up for more of a challenge, you can take on the full 20 miles!

We’ll bringing our boys along, and friends are joining with their children too, it’s going to be such a great day out for a brilliant cause!

👉 Join the walk here: https://orangejohn.co.uk/event/stand-by-benny-neuroblastoma-uk/

👉 Can’t make it? You can still donate here: https://www.justgiving.com/page/elish-mohammed-3?utm_medium=FR&utm_source=WA

Let’s come together, get active, and support something truly meaningful 🙌

13/04/2026

Thank you everyone who took part in the challenge for Benny 🩵 and for all the money that has been raised!

We are so glad that the weather was kind and brought some sunshine for you all to help keep those legs going to the end! ☀️

What an incredible day 💙

A huge well done and thank you to everyone who took part in Walk for Benny. The 13.1 mile journey around Durham wasn’t easy, but every single person showed amazing determination, strength and heart.

This walk meant so much, not just as a challenge, but as a way to support our Spectrum colleague and her nephew Benny as he bravely fights neuroblastoma. Seeing everyone come together, start together and finish together was truly special.

We’re so proud to share that £906 of our £1,000 target has already been raised 🎉 There’s still time to donate, and every little bit helps us get closer to helping Benny access life-saving treatment in Rome.

Let’s keep going and continue to Stand By Benny 💙Donate here: https://ow.ly/nRTS50YI7CA

11/04/2026

Good luck to everyone taking part in the walk today. We’re so grateful to you for taking on such a big challenge for Benny 💙 We hope the rain clears up for you ☔️

Help Julie Tough raise money to support Solving Kids’ Cancer UK

09/04/2026

A massive thank you to everyone at The Shipwrights for such a kind and generous donation to Benny 🩵

We are sure he will very much enjoy having some treats once he has been to Rome and completed his treatment!

A £300 gift card donated to little Benny to enjoy after his treatment which he will be having for Neuroblastoma in Rome .
If anyone would like to make a donation or read about his story you can find his page by benny

06/04/2026

A massive well done to Gary 👏🩵

Gary's challenge was one of our first fundraising events to be initiated at the start of Benny's campaign.

Over the span of 114 days, he has covered a staggering 1,393 miles, an average of 12.2 miles every day.

Just over a week ago on the 29th March, he completed his challenge with a 50km Ultra Marathon around Durham.

This has been a gruelling task which has taken such determination and resilience, but we are so grateful for him taking this on for Stand by Benny 🩵

Congratulations again to Gary Tough 👏

26/03/2026

Just a little update from us.

Benny had a follow up CT scan earlier this month due to some areas of concern that had been flagged on his scans in January. Thankfully, we got the news that those areas of concern were no longer visible so it was likely that this was inflammation that had now passed.

In the same week, our consultant at the RVI had a call with the consultant in the Rome hospital and it seemed as though plans were progressing, and quickly. On Thursday last week, we got a date to travel. By Friday, flights and accommodation were booked and we thought we would soon be on our way. However, plans took a step back during the early hours of Sunday morning when Benny got a temperature and was admitted to hospital. They discovered that he had an infection in his central line in his chest so on Tuesday he went to theatre to have it surgically removed.

He has now got a temporary picc line in his arm which is really difficult for an active 5 year old to cope with. This can be painful and very restrictive, and despite him saying he really didn’t want to have one, he’s been so brave and as he always does, has just got on with things.

At the moment, the plan is to have 2 weeks of IV antibiotics and then they will make sure the infection has cleared from his blood stream. Once this is clear, they’ll arrange to put a new central line in, which requires another surgery. We are currently awaiting new provisional dates from the hospital in Rome.

It is disappointing that travel to Rome has been postponed when this is the point that we have all been working so hard to get to, but we want him to be fit and well going into CAR-T treatment when all our hopes are pinned on this being Benny’s cure.

Despite a little blip with his line, on the whole it’s been a positive month with things moving forward. We would like to take the opportunity to thank you all once again for your continuing support. Without all of you, we wouldn’t even be having these conversations and we will be forever grateful to each and every person who has helped us get Benny to this stage.