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Home > Knowledge & support > Resource hub > “I’m hopeful for what the future holds” – our journey with teplizumab
“I first heard about the ELSA programme through my son Dima’s school. It was just a general email, one of the many letters parents receive. The screening was described as a simple blood test to check for early signs of type 1 diabetes (T1D). Because T1D runs in my family, I decided to sign Dima up.
At the time, Dima was nine. When the results came back, I was told it was highly likely that Dima would develop T1D. We were referred for follow‑up testing at our local hospital, where more blood tests confirmed a diagnosis of stage 2 type 1 diabetes, which meant he was pre‑insulin but would develop type 1 at some point in the future.
Because Dima’s diagnosis came through ELSA, we were contacted by Dr Renuka Diaz, who’s part of the early detection clinic in Birmingham. She told us about a new treatment, teplizumab, that was not yet available on the NHS but could be granted on compassionate grounds while the treatment was awaiting approval from NICE.
She asked whether we would like to consider it. I spoke at length with my sister, whose daughter was diagnosed when she was only seven. I also read and researched carefully. This wasn’t an easy decision. However, I believed in the science and if there was a chance we could delay the need for insulin, I thought it was worth it.
I still remember where I was when I got the call confirming that Dima had been approved for treatment. We were on holiday in Cornwall, about to visit a beautiful beach. That moment is one I’ll never forget.
Before treatment started, we had a video call with Dr Diaz. This was incredibly reassuring. She explained everything to us; about the treatment, what each day would look like, and the process. She was also very kind to Dima, who had his own pressing questions – although they mainly concerned what food the hospital serves and whether he’d get his own bed!
For me, explaining medical concepts in child‑friendly language was hard, so that call made a huge difference. Dima felt calmer, and so did I.
We also learned that Dima would be one of the very last people to receive teplizumab, as the scheme was about to end. It felt as though we managed to catch him just in time, and I was so grateful for the opportunity this gave us.
In September 2025, we travelled to Birmingham to begin treatment. Logistically, this was one of the hardest parts. We live in Newbury and I work full‑time in finance. The timing fell right at month‑end – our busiest period. I couldn’t take time off, but my workplace was flexible and allowed me to work remotely from the hospital and our BnB when possible.
The hospital team went above and beyond, even lending me a Wi‑Fi device so I could work while Dima received treatment. We stayed in accommodation just five minutes from the hospital, which helped enormously.
It wasn’t easy. I was caring for Dima and working at the same time, and Dima still had schoolwork to complete. But the hospital team supported us in every way and there were books, activities and music sessions. The children were even visited by a therapy dog, he enjoyed this a lot!
The treatment was delivered via infusion every day for two weeks. Each day began with checks – blood tests, temperature etc – before treatment could start. The infusion itself was relatively short, around 30 minutes but we would have to stay for monitoring for a few hours after.
Dima did experience side effects during treatment. He developed a fever and a significant rash, which peaked during the period when the teplizumab doses were at their highest. The rash first appeared towards the end of the first week and only started to settle as treatment neared completion. While his known sensitivity to some liquid medications may have contributed, his medical team felt this was likely a combination of factors, with teplizumab being the main contributor. He was monitored closely throughout, and the team carefully reviewed his progress each day.
When the two weeks ended, I felt relief. Dima, surprisingly, felt sad. Even despite some complications, he’d been cared for so well that he actually looked forward to going in. The team in Birmingham, especially Jenny and her colleagues, are wonderful people. Saying goodbye was emotional for Dima. There were lots of hugs!
After treatment, we returned home and resumed normal life. Dima is now monitored locally every three months. So far, he remains symptom-free, and I’m hopeful this continues.
“It wasn’t bad really. I liked the board games and the food especially,” said Dima. “I think for anyone thinking about doing it [teplizumab], it would be better for them to go for it. Because even though it’s hard, it would still help them a lot. And there’s great staff there too.”
One thing I feel very strongly about is this: don’t ignore opportunities like ELSA.
When I later spoke to parents at Dima’s school, many told me they hadn’t paid much notice to the letter. Out of around 60 children, only a handful took part. That decision, opening the email and signing up, changed everything for us.
If we hadn’t done it, Dima might have been diagnosed much later, possibly at a stage where he’d need urgent intervention, like my niece.
The greatest gift teplizumab has given us is time. As a mother, every month and every year that Dima can continue being a child without insulin injections, carb counting and the daily burden of T1D feels incredibly precious.
For people considering teplizumab, I do want to say that it’s not a holiday, it’s hard work. But I also know what having T1D looks like. Yes, the technology is great but it’s the constant carb counting, the hypos at night. And for a child, that’s really tough. So if there’s a chance of postponing this period, I would definitely give it a go.
I’m grateful I didn’t ignore that letter. I’m grateful for ELSA and teplizumab. And I’m hopeful – very hopeful – for what the future holds for Dima.”
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Our research is improving the lives of people with type 1 and making strides towards a cure. We’ll keep pushing until we make type 1 diabetes a thing of the past.