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Elijah, a premature baby who died of a rare disease that Action Medical Research is working to prevent

Why we Race the Sun: Elijah's story

Our three-activity team challenges, Race the Sun - Lake District and Race the Sun - Isle of Wight, support the invaluable work of the children's charity Action Medical Research, who are forever committed to developing effective treatments and cures for devastating illnesses that threaten and hinder children's lives. One of the charity's latest priorities is to save the lives of premature babies by investigating ways to identify life-threatening diseases sooner, before it becomes too late.

 Elijah was born prematurely at 25 weeks, but despite a positive initial prognosis, he tragically died at just 37 days old as a result of necrotising enterocolitis (NEC).

“Elijah led a very traumatic little life. He died sleeping on my chest in the small hours – that’s when I joined the fight to stop premature birth,” Elijah’s mum, Jenny, says.

Necrotising enterocolitis (NEC) strikes rapidly. Any warning signs look much like any signs a premature baby might show when feeding. In many cases, by the time you know it’s there it can be too late to save the baby.

“Elijah went from being well and stable, being held by us, to his abdomen being entirely distended and turning a deep purple in colour within hours” explains Jenny.

A surgical team operated on him in his room as he was too sick to be transported. They removed 82cm of his intestines, which NEC had destroyed.

The following week, a routine head scan showed that Elijah’s brain had become seriously damaged. In the days prior to surgery, while fighting to keep him alive, his brain had been starved of oxygen.

The damage was so great to both his brain and intestines that there was tragically no hope of him recovering and his parents had to make the difficult decision to move from intensive to palliative care. Elijah died in his parents’ arms.

“We were very lucky to have him, but his life was painfully short. He showed determination and strength in the challenges he faced so young. We hope that through fund raising for Action Medical Research, we can make a small difference in the care for other babies in a similar situation in the future,” Jenny says.

Elijah was part of a study funded by Action Medical Research before he died. The research team was investigating ways to identify NEC in premature babies, so that it may be detected before it becomes life-threatening. This research has enabled a follow up study with the hope of developing a diagnostic test for NEC. This work means so much to Jenny and husband, James.


Help save children like Elijah by Racing the Sun in 2019.

Race The Sun across the Isle of Wight and/or around the Lake District with three friends, canoeing, cycling and trekking from dawn till dusk in support of Action Medical Research.

Testing spirit, strength and stamina, these amazing adventures get you up from your sofa and onto your feet, bikes and boats across two of the most beautiful parts of the UK.

Not only will you help prevent children like Elijah from dying in the future; but you’ll also conquer a momentous challenge as a team.

learn more about Race the Sun - Lake District

More about Action Medical Research

Action Medical Research fund the very best research most likely to make a difference to the lives of sick babies, children and young people. This amazing charity has played a significant role in many medical breakthroughs for 65 years, starting with the development of the first UK polio vaccine.

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