Skip to main content

Jonah eyes September to end his treatment

SEPTEMBER is the provisional date for Jonah Gillingham to stop his treatment.

Jonah eyes September to end his treatment
Jonah eyes September to end his treatment / Guernsey Press

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.