Jake's Story

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Jake's Story

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 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.

“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.”

  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH