Wellingborough parents of daughter with heart condition back Rainbows children’s hospice appeal

Katie-Rae Edmunds underwent three major heart operations before the age of three and was never expected to survive.

‘Cheeky and determined’ Katie-Rae, now five, was born with Hypoplastic Left Heart Syndrome and has suffered several brain bleeds. No-one knows what her future holds.

Over the past 18 months, her parents Nicola and Neil have relied on the support of Rainbows Hospice for Children and Young People.

As a thank you, they are encouraging people to support the charity’s summer appeal.

Rainbows needs to raise around £12m a year to provide its services at the hospice, at home and in hospital to more than 750 babies, children and young people.

Only receiving 13 per cent of government funding, Rainbows could not do this without the help of supporters in Northamptonshire.

Nicola said: “We were told Katie-Rae had a 30 per cent survival chance.

"She had a heart operation at three-days-old, another at four-months-old and then again at three-years-old.”

After the last heart operation, Katie-Rae suffered a bleed on the brain following a silent stroke. She had urgent surgery to remove the damaged cells and drain the fluid.

Katie-Rae then alternated between settling on the ward to being rushed to the paediatric intensive care unit because of clots on her brain and then a second bleed.

Nicola said: “At this point, we were told the worst; that there was no coming back.

“We were asked to sign a do not resuscitate (DNR) and this is when we were introduced to the support of Rainbows.

“Her brain was so swollen, it was out of her skull.

"We were told that if she were able to breathe on her own, her heart might not stand it once she was taken off life support. But she breathed on her own, which was a surprise to everyone.

“We left the ward unaware of what was to come.

"Suddenly, she made a complete U-turn and at that point, no-one could believe it.

"She was a walking miracle. She slowly started to talk and do facial expressions.

“Rainbows has supported us all the way though.

"Our family support worker was my go-to for all concerns and support and they have helped me so much with my mental health.

“For our son, SJ (nine), it has been a lot for him to go through and he has benefited from Rainbows’ sibling support services.

“Without Rainbows we wouldn’t have been able to manage, even if it is for Katie-Rae to have that break so we can put SJ first.

"He would be in a different place if it wasn’t for Rainbows.

"Katie-Rae loves being at Rainbows too. She is very strong minded and amazing at what she does. She takes everything in her stride.”

Katie-Rae’s condition is now more stable and she talks very well. She is learning how to walk again and adapting to being blind. But tragically, her parents know time is precious.

Nicola said: “When her heart starts to fail, she will be in heart failure and that is it.

“We know there is no option for more surgery, which is hard. We don’t know what the future holds, we just have to live each day, and each day is a blessing.”

To support the appeal visit rainbows.co.uk/summerappeal