'They just give so much' - Call to wear red for fundraising drive in aid of Leeds' life-saving heart unit

Rachael O'Connell said her son Elijah, three, is “one of the lucky ones” thanks to the expertise of the congenital heart unit team at Leeds Children’s Hospital who operated in June last year to fix a hole in his heart.

Now recovering well at home in Kirkstall, Elijah and his family are planning to show their gratitude by taking part in Wear Red Day - the annual flagship fundraiser of the Children’s Heart Surgery Fund (CHSF) which supports the heart unit at LGI.

Taking place on Friday February 5, Wear Red Day encourages businesses, schools, community groups and individuals across Leeds to wear red and organise simple - and for this year, virtual - events to help raise lifesaving funds.

Rachael said: “The charity [and unit] have existed for a long time but it’s only when something like this happens to you that you become aware of them and what they do.

“I just have the utmost respect. They just give so much - and that’s everyone, the surgeon, the nurses, the play specialists who would check you’re not bored and bring more toys, the people who check what drink you want.

“Everyone just goes out of their way.”

She added: “Seven months post surgery and Elijah is doing really well and is full of energy and very cheeky.”

Little Elijah was just hours old in March 2017 when his newborn checks picked up on a strong heart murmur.

Scans later revealed he had been born with a condition called ventricular septal defect.

Rachael, 34, said receiving that news was like the “world collapsing”.

“I didn’t really hear what they said to me after ‘he has a hole in his heart’, as I tried to make sense of what this meant for Elijah and wondered if he was going to die," she said.

Doctors decided to wait to see if the hole would close by itself or whether surgery would be needed and Elijah had scans every six months to monitor the situation.

“We just lived our lives every six months," said Rachael. "I tried to block it out of my mind. In your head they’re always saying look out for him being lethargic or a blue tinge but there never was.”

Eventually, in January 2020, the surgical team told Rachael and her husband Ben, 36, that the time had come for Elijah to need surgery.

“We had to sign all sorts of papers - two per cent possibility of death, that he might have a stroke, he might need a permanent pacemaker. Ben had to sign the papers in the end.”

Elijah was then given a date of June 12 for his open heart surgery, despite the Covid-19 pandemic.

Rachael said: “It was made even worse by the fact that Ben couldn’t be there. He dropped us off on the Thursday morning and Elijah didn't see him again until the Tuesday when he picked us up.”

Elijah underwent seven hours of surgery on the Friday before a stay in intensive care and then high dependency but was then discharged home to continue his recovery.

Rachael said: “It blew my mind. It was just brilliant. We were home on the Tuesday, that was crazy. He rested up for a few days but he’s a crackers three year old anyway - he runs everywhere, never walks. I think a few days later he was out on his balance bike in the garden.”

Elijah has so far had two post-op scans and is due another soon but Rachael remains hopeful he will need no further procedures.

She said: “He is one of the lucky ones. There are children that need multiple open heart surgeries. This is hopefully the one and only [for Elijah]. It’s a lifetime repair as long as everything stays as it is. It’s a patch that he’s had put over the hole, although one surgeon did say that it could come loose.”

Not long after Elijah’s operation, Rachael took part in the Children’s Heart Surgery Fund’s Virtual 10k on July 5 as a way of giving back.

The charity had funded the accommodation Rachael stayed in while Elijah was in hospital and sent him the Katie Bear mascot with a certificate and medal to their house afterwards.

“Even though I live locally it was so helpful to have a bed close by. They also raise money for equipment and just offer constant support.

“I can’t run so I said I’d walk as fast as I possibly could. Friends and family got involved and helped and I did it in one hour and 58 minutes and raised about £600.”

Now the family hope to boost CHSF’s coffers further by taking part in the Wear Red Day.

“Me and Elijah will be doing it in our living room and I’ll be getting friends and family involved.

“It’s really important to raise money for them - and every little bit helps,” she added.

This year is the ninth annual Wear Red Day and will be the first time the event has taken place in lockdown - so the charity is asking people to think creatively, such as businesses organising red-themed virtual bingo, raffle or an online social event to raise funds.

Sharon Milner, CEO of CHSF, said: “Lockdown removes our ability to fundraise within the community but our mission to support hearts for life remains the same so please help us to raise donations in other ways.”

She added: “This event means so much to us, both as our flagship annual fundraiser and as a means to raise awareness of congenital heart disease which affects thousands of families in our region.

“The statistic remains that one in 100 babies are born with severe and sometimes life-limiting heart defects, but donations can make a huge difference to the youngest of patients and their families.”

Key businesses and buildings in Leeds including the Merrion Centre, Bridgewater Place and Trinity shopping centre have already pledged to turn their lights red on February 5 in support of the event.

Charity chiefs at the Fund have also suggested schools could collaborate on a ‘stair climb challenge’ to accumulate steps and climb the equivalent of Ben Nevis or the Eiffel Tower - while wearing red.

Supporters and families are being encouraged to set up fundraising pages on Just Giving or Facebook.

Ms Milner added: “COVID-19 took its toll on our charity in 2020, and as the pandemic continues to affect our income this year, we need your support more than ever to help save lives.

“We appreciate how tough life is for many people right now, but donations of any size can really add up and will have a major impact.”

To receive a free fundraising pack visit chsf.org.uk/wear-red-day or email [email protected].

To donate to Wear Read Day by text message, text CHSFWRD (plus any £amount up to 20) to 70085. For example, text CHSFWRD 3 to 70085 would give £3 to CHSF. [To give £3 but not receive marketing communications, text CHSFWRDNOINFO 3 to 70085.]

Supporters can also use hashtag #WearRedDay on social media posts to connect up with other fundraisers.

*YEP's Have a Heart campaign

The Yorkshire Evening Post launched a Have a Heart campaign earlier this year, to help the Children's Heart Surgery Fund (CHSF) reach its £1m target for donations in 2020.

Since the coronavirus pandemic hit, CHSF has been forced to issue an urgent plea for donations after losing a "significant portion" of its yearly income.

Visit www.chsf.org.uk/donate.

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