Diss dad Wayne Lightning tells of heartache at losing son Jake, at just five weeks old
- Credit: Archant
A devoted father has spoken the heartache he and his partner went through after losing their 'perfect little boy' aged just five weeks old.
Wayne Lightning, 32, and Charlotte Keegan, 25, from Diss, were delighted when their first son, Jake Lightning, was born in August, 2015.
But just a week later they were told he had Edwards' syndrome, which meant he had only a 1pc chance he would live to see his first birthday.
For Jake, thae condition 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.
Despite a brave fight against the illness, Jake died a few weeks later - but his parents said the support they had from East Anglia's Children's Hospices (EACH) made all the difference.
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Mr Lightning said: 'Within the first week of Jake's diagnosis EACH counsellor practitioner Andy Jaggard, from the Quidenham 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.'
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Edwards' syndrome, also known as trisomy 18, is a serious genetic condition, in which some babies are born with three copies of chromosome number 18.
Mr Lightning, a store manager at Diss' McColl's, and friends and family Victoria Lawn, Ben Gaunt, Katy Boon and Matt Ward, are taking part in EACH's Heroic fundraiser in Jake's memory.
The 5km event involves navigating an obstacle course with tyre runs, barbed wire crawls and other surprises, to take place at Old Buckenham Airfield on Saturday, September 23.
Mr Lightning said: '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. We'd hate to think what it would have been like without them.'
For more information about the event, visit www.each.org.uk/heroic
To sponsor Mr Lightning and his team, visit www.justgiving.com/babyjake