Jonah eyes September to end his treatment
SEPTEMBER is the provisional date for Jonah Gillingham to stop his treatment.
Published
The 17-year-old student, pictured, was diagnosed with a rare disease, atypical haemolytic uraemic syndrome, last year after surviving leukaemia in June.
The medicine to treat it, Eculizumab, costs £300,000 a year.
The States funded a 12-week 'rescue remedy' of the medicine, which expired on 31 December, but a request to overturn the decision not to extend the treatment was denied.
As a result, his family launched a fundraising appeal to pay for it, and the community latched onto the cause – to date having contributed some £185,000.
The treatment has worked so well that his doctors are hoping to withdraw it in September to see how he reacts.
