My brother was diagnosed with Rosai Dorfman Disease in early 2020 at the age of 11 and started chemotherapy on 28th April 2020.

After many doctors appointments and various tests, a lump was found in George’s neck. It was confirmed to be an incredibly rare condition called Rosai-Dorfman Disease. The condition is so rare that it requires the care of specialist international consultants and treatment plans are often administered on a trial-and-error basis.

The cause of RDD is unknown, it can display different symptoms in different people and consultants are continually learning about the condition as more cases appear across the world. This has been the hardest bit for me - why don’t we know? How can we not know the best treatment? What research is being done? But, despite all this, I have learnt to put my trust in the professionals for caring for my little brother.

George’s treatment has included chemotherapy, radiotherapy, steroids and various other medication. Hearing things like ‘George’s cells are being sent abroad’, ‘he may need surgery at Great Ormand Street’ and ‘this new medication has not yet been authorised by the British Pharmaceutical Society’ is absolutely terrifying and I would be lying if I said these past 2 years have been easy.

But George’s strength and determination has been astonishing. Our family has grown stronger. We have seen how important positivity, honesty and communication is. George has continued to be that same annoying (yet loveable) little brother, who loves playing games and winding his siblings up!

I hope to raise awareness about RDD, and support George and the thousands of children receiving similar treatment, by running a half marathon later this year.

George is my hero.

Stay tuned on social media for Josh’s Just Giving as he is running by my side (many kilometres ahead of me) for the same charity!

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