A devoted father from Diss has opened up about the heartache he and his partner went through after losing their “perfect little boy” at just five weeks old.

Jake Lightning was born at 12.49am on 14 August, 2015. His parents, Wayne, 32, and Charlotte Keegan, 25, were naturally delighted, however, a week later they were told Jake had Edwards’ syndrome – and that there was a 1% chance he would live to see his first birthday.

Edwards’ syndrome, also known as trisomy 18, is a serious genetic condition. Each cell of the body normally contains 23 pairs of chromosomes, but those with Edwards’ syndrome have three copies of chromosome number 18.

For Jake, that meant a hole in his heart, his face and right ear being out of place and overlapping fingers. He had trouble feeding from a bottle, too, so often had to be tube fed.

There was no sign of the condition during Charlotte’s pregnancy and Wayne said they “took this as a sign Jake didn't want to put us through any distress during the pregnancy and was determined to come and see the world”.

Jake went home at three weeks old and eventually passed away at 12.49am on 18 September, exactly five weeks old – quite incredible given half of babies born with Edwards’ syndrome die within two weeks.

During their short time together, the family received care and support from EACH. It was a service, said Wayne, that made all the difference.

“Within the first week of Jake’s diagnosis [EACH Counsellor Practitioner] Andy Jaggard, from the Norfolk hospice, was at the hospital doing memory work with us.

“A meeting was held shortly after to discuss getting Jake home for us to have some precious family time and to try and lead as much of a normal life as we could before Jake was taken from us. A plan was also put in place for end of life care.

“We still receive care and support from EACH as and when we need to. When Charlotte was pregnant with our second child, Bradley, it was a stressful time for us as we couldn’t help thinking ‘Will it happen again?’ EACH was a fantastic support for us, though.

“There are just too many people from the organisation to mention personally, but they really have made a massive difference to us and our extended family. We’d hate to think what it would have been like without them.”