Staveley family thank community for support after adored baby passed away aged just four weeks from rare heart condition

Proud Staveley mum Kirsty Johnson 'never wants people to stop talking' about her four-week-old son, Rupert- affectionately known as Roo Bear.

Thursday, 19th September 2019, 12:19 pm
Rupert Horne was just four-weeks-old when, tragically, he passed away in his mum's arms. Photographs kindly provided by the family.

Roo may only have been four-weeks-old when his life was snatched away by a rare heart condition- but 'he touched so many people' in that short space of time, and 25-year-old Kirsty is determined to keep the memory of her little boy alive.

A Just Giving page launched in the tot's honour has already raised more than £1,500- vital funds that will help other children suffering from heart defects and their families.

Mum Kirsty said: "On August 14 2019, our little boy Rupert entered the world kicking and screaming.

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Rupert Horne was just four-weeks-old when, tragically, he passed away in his mum's arms. Photographs kindly provided by the family.

"Unfortunately, Rupert had a very serious heart condition called Tetralogy of Fallot with pulmonary atresia and mapcas.

"At 13 days old, Rupert went for a procedure to help support him until he was old enough for major surgery.

"However, Rupert suffered his first cardiac arrest and the surgery didn’t work. He was placed on an ECMO machine, which was keeping him alive.

"Rupert then suffered a second cardiac arrest two days later when doctors tried to take him off this support.

Doting big sister Amelia with Rupert.

"Finally on day 30 of Rupert's life he was taken to try and do the procedure again, it was our only option to save him.

"t didn’t work and he passed away in my arms that evening."

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Kirsty and her partner, Ben Horne, are staying strong for their four-year-old daughter and Rupert's big sister, Amelia.

Proud mum Kirsty Johnson with Rupert and big sister Amelia, four.

"We want a big party for Rupert, rather than a wake as such, and Amelia is doing the planning," said Kirsty. "So far she's asked for mermaids and cake.

"Our family and friends have been amazing."

The couple have also thanked staff at Glenfield Hospital who looked after Rupert.

Currently, they are channelling their grief into something positive- raising awareness and money for the charities that supported them through their heartbreak.

The family now want to raise funds and awareness in Rupert's memory.

These include Heart Link and the Lily Grace Cunliffe charity.

You can donate to Rupert's Just Giving page and help smash the £2,000 target at: https://www.justgiving.com/crowdfunding/rupertjohnsonhorne

Dozens of tributes have flooded in on the page.

Kevin Eccles said: "God bless you, little boy. My thoughts are with you."

Steve Reeves said: "I’m very sorry to hear about the little chap, he put up a real fight. Your dad has been keeping us (at his work) updated with Roo’s battle over the last couple of weeks."

Robert Storey said: "That must have been unimaginable pain at what should have been a time of immense joy. God bless you."

Little Rupert suffered from a very rare heart condition.

Zoe Morton said: "No words other than what a wonderful thing you are doing. Heartbroken for you. Rest in peace, little one."