Elijah's story | Action Medical Research

Elijah's story

Necrotising enterocolitis (NEC)

“Each April, before the anniversary of our son’s death, I particularly notice the change in the days, the temperature and the light, the daffodils coming through,” says mum Jenny. “Elijah lived a very turbulent life, and we relive it every spring.”

Elijah was born extremely prematurely at 25 weeks and three days, weighing just 823g – less than 2lbs – and, sadly, lived for just 37 days.

At first, Elijah seemed to be doing well, but things changed suddenly when he contracted the devastating bowel infection necrotising enterocolitis (NEC).NEC happens when the lining of a baby’s intestines becomes inflamed and starts to die.

Elijah endured urgent surgery to remove 82cm of his intestines which NEC had destroyed. Sadly, he was left with a condition called short bowel syndrome. He also suffered severe brain damage and Jenny and husband James had to make the heartbreaking decision to move from intensive care to palliative care.

“Elijah’s brothers were able to come in and hold him for the first and last time, and say goodbye. We have to be thankful that he died in our arms,” Jenny says.

Elijah took part in an Action funded study to develop a new test for NEC so that babies at risk of this terrible disease can be diagnosed and treated sooner. The charity is funding further research into NEC to help save tiny lives.

Determined to support this vital work, Jenny and James set up ‘Team Lightning’ and undertake running events for the charity every year in their precious son’s memory.

“Elijah led a very traumatic little life so any change that could stop another child going through this would be amazing,” Jenny says.

Have you been affected by Necrotising enterocolitis (NEC)?

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