Rafi’s story: Milk allergy breakthroughs as a participant in The Natasha Clinical Trial

Meet ten-year-old Rafi, gamer, runner and a participant in The Natasha Clinical Trial.

When Rafi isn’t busy at school, playing sports or spending time with his family he pops into the Clinical Research Facility (CRF) at Sheffield Children’s to try and improve his reaction to milk.

When Rafi was at one of his regular allergy appointments, he was told about The Natasha Clinical Trial. It’s a three-year study that aims to find a new way to treat people who have severe allergies to peanuts and milk. Instead of using expensive medicines, the trial will explore whether small amounts of peanuts and milk, taken carefully under the supervision of doctors, can help reduce allergic reactions over time.

Rafi said: “I have a milk allergy and I wanted to get rid of it. If I have milk, it sometimes makes my face go puffy and causes me to be sick.”

Each day Rafi will have a small amount of milk with the aim of increasing his tolerance to it and every other week Rafi and his family will visit the CRF to have the amount of milk he can take increased in a controlled setting with healthcare professionals around him. Once it’s seen that there’s no reaction, he heads home and takes that amount of milk every day for the next couple of weeks, noting any changes along the way. Rafi’s dad said: “Each day we fill out a diary on an app to note how Rafi is doing, what time he had the milk and any reactions he might have had. The app is really easy to use and you can access it anywhere with it being on your phone.”

Since being on the trial and taking part in research Rafi and his family have more reassurance that he will be ok if he accidentally has milk. “It’s had a big impact on me, I used to not be able to have any milk but now I can have a splash of milk and I feel ok. It gives me hope that I’ll be able to have milk and milk-related goods in the future”, Rafi said.

Rafi’s dad added: “In the past we were worried that even a small amount of milk would lead to a really big reaction, but this trial has provided us with more reassurance, which is amazing! I would have given anything for that sort of reassurance before. The idea that he might be able to have something like cheesy pizza in the future would be great and definitely something that we take for granted.

“I also feel calmer about Rafi going off to friends’ houses; if there ever was a small accident where he did intake milk, his reaction shouldn’t be as bad, but Rafi is becoming a bit of an expert when it comes to milk and his symptoms so he’s good at taking care of himself.”

Since joining the trial Rafi can now have small amounts of milk without having a reaction and the hope is that as he continues in the trial his tolerance will only increase, lowering the risk of an allergic reaction.

Rafi added: “I would tell people to take part in research because it can help you feel better, and it can build your confidence in trying new things.”

Rafi’s dad said: “The experience so far on the study has been really good! It’s not only helping Rafi’s milk allergy but coming to the research facility and taking part in the Natasha trial is another experience that builds Rafi’s confidence, it’s been really helpful.”

Paula Froggatt one of our Research Nurses who helps to look after Rafi when he visits said: “It is always really rewarding to see the positive impact that research is having for the families taking part. Seeing the positive affect it has not only on Rafi’s tolerance to his milk allergy but also to his confidence is amazing. By Rafi taking part, he will help us to understand further the affect this treatment has, hopefully making this available to more children and young people in the future.”

Sibel Sonmez-Ajtai, Paediatric Allergy Consultant and Principal Investigator said: “This study is enabling us to do something we would never have dreamed of doing before – giving patients the foods we know they are allergic to! We as healthcare professionals involved in groundbreaking research such as this are learning so much about food allergies and tolerance.

“This treatment is not a cure for a food allergy, but what it achieves is life transforming. To have a patient who has had anaphylaxis to 4mls of milk to then tolerate 90mls within six to eight months is nothing less than a miracle. We are very fortunate to be able to take part in the Natasha Clinical Trial as a research site and be able to offer this innovative treatment to our patients.”