Charity's call to action to support children's heart surgery in Leeds

The Covid-19 crisis has led to widespread financial uncertainty among the charity sector yet many are busier than ever.

At Leeds’ Children’s Heart Surgery Fund (CHSF), which supports the work of the congenital heart unit at Leeds General Infirmary, the consistent statistic that one in every 100 babies will be born with a heart defect forms the basis for their latest fundraising drive.

Their ‘One in 100’ challenge asks people to raise £100 before the end of the year in any way they wish - be that giving up booze, baking and selling 100 cakes or running a marathon.

Andy McNally, Marketing Manager for CHSF said: “The One in 100 challenge offers a positive end to a very testing year for us all, as supporters can take up a new hobby or quit a long-lasting habit for our brilliant cause.

“Please consider raising £100 for the one in 100 babies in our region who are born with congenital heart disease, to help these young patients and their families face the journey ahead.”

In February, the Yorkshire Evening Post launched a Have a Heart campaign, to help CHSF reach its £1m target for donations in 2020.

But the coronavirus pandemic hit just weeks later and the charity was forced to issue an urgent plea for donations after losing a "significant portion" of its yearly income.

Its CEO Sharon Milner said 2020 has proved to be a “highly testing” year, adding: “We don’t know what the future holds, and it’s a worrying time for all organisations including those in the charity sector.

“Income from this year so far is not what we expected, particularly because traditional fundraising events have not taken place, and we know the challenges ahead are significant.”

But she added: “Despite our financial uncertainty, we are looking to the future with positivity.

“We hope the public will continue to lend their amazing support to the one in 100 babies who are born with congenital heart disease and their families in our region.”

This latest campaign follows similar online fundraising initiatives organised by CHSF in response to the pandemic, such as their virtual 10k challenge earlier this year.

The charity has also come up with new ways to support its families, by using its funds to deliver a programme of wellbeing sessions to help those caring for children with congenital heart disease during the Covid-19 crisis. .

Delivered by Halsa Wellbeing, which works with charities to support parents of children with health issues, the twice-weekly online sessions focus on movement and relaxation techniques to help release tension and stress.

Sharon said: “Caring for your children during the Covid-19 pandemic is stressful for every family and it can be even more so for families of vulnerable children with complex heart defects.

“We are delighted that parents are feeding back to us that these sessions are having a positive impact on their wellbeing during this pandemic.”

Among the equipment that CHSF has continued to provide for families during the pandemic is the INR blood home-testing kit - and never has it been more vital.

These kits allow users to monitor their clotting levels at home, avoiding the need for them to go into the potentially high-risk settings of a hospital or doctor’s surgery during Covid-19 crisis.

Little Evelyn Hunter was given an INR kit after she had open heart surgery in February at the Leeds congenital heart unit.

It was the third time surgeons had operated on the brave six-year-old after she was born with a condition called hypoplastic left heart syndrome.

The diagnosis came at mum Anna’s 20-week pregnancy scan when doctors initially gave Evelyn just a 30 per cent chance of surviving pregnancy.

But she defied the odds and has continued to amaze doctors with her strength and recovery ever since.

Following her first two operations, when shunts were put in her heart at four weeks and then seven months old, this latest surgery essentially re-wired her heart to pump less blood.

The INR kit has allowed her family to test Evelyn’s all-important blood-clotting levels at home during lockdown - and even alerted them to a potentially life-threatening issue early on.

Mum Anna, of Idle, Bradford, said: “Quite soon after [hospital] discharge there were quite a few concerns and complications with her.

“The kit was able to detect her clotting level was way too high - which can have a risk of strokes, which makes it all quite a bit scarier. But we picked up on that and rang the pharmacy and got her medication levels adjusted.

“It’s been fabulous.”

For Evelyn, being able to test her blood in the comfort of her own home has also been a major relief.

Endless tests and scans throughout her young life had led to a fear of hospitals and procedures - even requiring the involvement of a clinical psychologist and play specialists to prepare her for her latest surgery.

But mum Anna said having the INR home kit means she is now so much more relaxed.

“She tells us how to do it. She chooses which fingers she wants to use. It’s really encouraging her to know more about it and helped her to get used to it. Having it at home, she can do it in her time, there’s no rush for that appointment. It’s under her control. It’s really made life so much easier and so much calmer.”

Having initially had to test her blood every few days, she now only tests every four weeks as her incredible recovery continues.

And with so much more energy these days, she has now been able to take up her dream of dancing - something she was always too unwell to attempt before.

Anna said: “Last year she couldn’t keep up with her friends, couldn’t keep up with her little sister running around. She wanted to do dancing at school and while I didn’t want to stop her she physically just couldn’t do it.

“But now she’s just started dancing once a week and wants to do gymnastics too.

“She’s still recovering and it takes its toll but she’s just doing fabulous.

“I’m immensely proud. She’s just a little superstar. She just battles on and doesn’t let it stop her.”

For more information visit https://www.chsf.org.uk/1-in-100-challenge/ or to donate directly to CHSF visit https://www.justgiving.com/campaign/CHSF-heart-unit-needs-you.

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Thank you

Laura Collins