Stand by Benny

Stand by Benny Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Stand by Benny, Medical and health, Newcastle upon Tyne.

Benny, 4 💙
Stage 4 high risk neuroblastoma
Diagnosed February 2023
Relapse September 2025
Documenting his journey and fundraising to get him to Rome for CAR-T cell therapy.

T-cell infusion dayBenny was admitted to hospital as an inpatient last Thursday in preparation for his CAR-T cell therap...
04/06/2026

T-cell infusion day

Benny was admitted to hospital as an inpatient last Thursday in preparation for his CAR-T cell therapy. He started the first of 3 days of chemo on Saturday. This is designed to reduce the number of lymphocytes (white blood cells) in his body, ready for the modified t-cells to be infused.

He had a couple of “rest” days and then today the cells were put back into his body. They brought a virtual reality headset for him to use as a distraction while they were putting the cells back in and he enjoyed watching some bees buzzing around 🐝

Benny is still feeling well in himself. After the infusion he seemed a bit delirious in the way that he was talking and walking but the doctors assured us that this is normal. There’s still a very strong sweetcorn smell lingering in the room from the preservative that they use for the cells.

From what we’ve heard, the side effects usually start to appear from around 3 days post infusion so now we just wait and make the most of him feeling well in the meantime.

To everyone that helped us reach this point in any way, thank you from the bottom of our hearts ♥️



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 🙌

Address

Newcastle Upon Tyne

Alerts

Be the first to know and let us send you an email when Stand by Benny posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Business

Send a message to Stand by Benny:

Share