We have no idea how long we will be with Robin so we try to make every day his best

A COUPLE who planned for their severely ill son’s funeral have spoken about what kept them going through their darkest days.

- By JOSHUA HARTLEY

Emma Allum, of Arnold, was 25 weeks pregnant when her unborn son Robin suffered a stroke in the womb. He is believed to be the youngest stroke survivor in the country.

“After months of weekly scans, test after test and never knowing if Robin was still alive each week, Robin was born screaming at how unhappy he was to be disturbed from his warm bed and sleep, something that upsets him even today,” said dad Dave. “But he had made it”

However, the stroke damaged Robin’s corpus callosum, the middle part of his brain which joins the two sides and supports many neurological connections.

The now six-year-old has significant and complex needs including cerebral palsy and epilepsy. He is also unable to swallow, leading to extreme respiratory fragility, and cannot sit, stand, walk or talk. He needs round-the-clock care and sometimes just stops breathing.