Rupert’s Appeal from his Mum and Dad

For the past two years, Rupert has undergone continuous intensive cancer treatment for Stage 4 High Risk Neuroblastoma. Throughout his treatment he has remained lively and full of fun.

Sadly, Rupert’s cancer remains within his bones. Doctors have told us that Rupert does not meet the clinical criteria set for ‘high dose chemotherapy’ or the potentially lifesaving ‘immunotherapy’ as he falls into a tiny rare subgroup called Refractory Neuroblastoma.

His specialist consultant in London explains that Rupert’s treatment is now in ‘uncharted waters’, with no clear direction as to what to do next as there is no effective treatment within the NHS.

But the world is a big place, bigger than just the NHS!

They continue to discuss what Rupert’s best options are, within the NHS, but ultimately their decision making is restricted by protocols, NICE guidelines, availability of trials and drug licensing agreements.

Rupert, is 6 years old and has already tolerated two years of horrendous treatment and remains not just well but he is full of energy! Every consultant we see comments upon how surprisingly well and energetic Rupert is given the extent of his disease and treatment received.

On paper he shouldn’t be!

Rupert has bounced through treatment, exceeding expectations, and he certainly does not conform to the statistics.

Even as I type this, I just can’t believe that this is happening. I am completely devastated and it is so inconceivable to us that Rupert has exhausted treatment options within the NHS. Ultimately, the best chance Rupert has of a future, of defeating his crocodile, is for us to directly pay for his treatment. There is a chance of effective treatment, but not within the NHS.

So, we now turn our fundraising efforts, to directly pay for Rupert’s treatment.

To help save Rupert, to give him the best chance to continue with his mischievous, lively and energetic life, we need your help please.