LITTLE Damien Henzell is an innocent child, help him to continue the treatment of a new drug called eculizumab, he needs to maintain the improvements the drug has made to his life.
The six-year-old boy faces an uncertain future after health ministers decided not to recommended the treatment he uses on the NHS.
He suffers from Atypical Haemolytic Uraemic Syndrome (aHUS) – a rare disease that leads to kidney failure.
Damien is treated at Newcastle’s Great North Children’s Hospital and consultants decided he should be given eculizumab to offer him the best outcome.
Dr Sally Johnson, a consultant paediatric nephrologist, said: “Damien’s story demonstrates the incredible transforming effect of eculizumab on the lives of children with aHUS.
“Some children in the UK have received funding from their primary care trusts for eculizumab treatment.
“Damien’s PCT have refused to fund his treatment with eculizumab and this illustrates the inequality that occurs when high-cost treatments are commissioned locally.
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