Mum of little heart hero Charlie urges city to support 'Wear Red Day' and raise vital funds for Leeds congenital heart unit

Charlotte Hillyard has urged the people of Leeds to take part in Wear Red Day - the flagship fundraiser of the city’s Children’s Heart Surgery Fund (CHSF) - which takes place this Friday, February 4.

This year marks the 10th anniversary of the annual event which urges all supporters to wear something red and help raise vital funds for the congenital heart unit at Leeds Children’s Hospital.

Charlotte’s son Charlie has been at the hospital since he was born 17 weeks ago, after he was diagnosed with hypoplastic left heart syndrome - a rare complex heart defect which means the left side of his heart hasn’t developed properly.

Little Charlie had to have open heart surgery when he was just five days old and faces at least another two further surgeries - one when he is four to six months old and a second when he is older still.

His family has been told these surgeries will never cure his condition but aim to help him have a better quality of life.

Charlotte, a mum-of-five from Calverley, said: “Our world stopped when we received Charlie’s diagnosis initially. It was all so overwhelming and unknown.

“But we have met so many amazing people who have really helped us through and to see Charlie progress to where he has today, we will be in a debt of gratitude to all the nurses, doctors and surgeons forever.”

After Charlie’s first surgery, he remained in intensive care for 14 weeks before being moved to ward 51.

“Throughout our entire stay, the support and care we have received from both the intensive care team, the surgical team and the cardiology teams on ward 51 has been truly amazing,” said Charlotte.

“They have cared for Charlie, us as parents and our family including his four siblings at home, who due to Covid only finally managed to meet [him] on Christmas Day.”

Charlotte also praised the Children’s Heart Surgery Fund, which she said had provided vital support, including help with travel costs.

“These things have always seemed to pop up at a time they were needed most and we are so grateful and so lucky to be looked after in Leeds.

“There is constantly an ear to listen if you need it and we know that if there was anything we needed, someone would be on hand to help us in any way possible.”

She urged people to back the charity’s Wear Red Day this Friday and show their support to such a worthwhile cause.

“As a family, once Charlie is well and home we will make an effort to raise funds as a small way of repaying our thanks.

“We hope we can spread awareness among our family and friends and Wear Red Day is a perfect way to start.

“It’s really simple - wear something red, donate a little but make a huge difference to the lives of many.”

Wear Red Day was founded by parent supporter Carmen Greene and her sister Emma Emmerson, in 2012 when Carmen’s five year-old son Ciaran was diagnosed with congenital heart disease (CHD) and awaiting open heart srugery.

Since then, CHSF has organised Wear Red Day every year on the first Friday in February and raised a total of £330,000 so far.

Carmen said: “I’m so proud of what Wear Red Day has become and achieved through the Children’s Heart Surgery Fund and its supporters.

“We never imagined it would raise this much money for patients with congenital heart disease.

“Please help us celebrate the 10th anniversary this year, and take part in whatever way you can to help future children and families.”

An average of 13 babies each day in the UK are diagnosed with a heart defect - with more diagnoses later in life.

Congenital heart disease is the most common birth defect in the UK, affecting around one in every 100 babies that are born.

Any child born with a heart defect in Yorkshire, the Humber and North East Lincolnshire will be treated by the Leeds Congenital Heart Unit and supported by CHSF.

The charity has funded life-saving equipment, much-needed parent accommodation, essential ward facilities and medical research for the unit and heart families since it was set up in 1988.

Businesses, schools, families, community groups and individuals are all invited to take part and pledge to wear red this Friday.

Some of the Leeds city centre buildings and landmarks which will turn their lights red on Friday in support of the fundraiser are Trinity Leeds and Leeds Network Rail dark arches.

To register for the event, visit http://chsf.org.uk/wear-red-day to receive a free online pack with ideas and tips for fundraising.

For text donations before or after the event, text CHSFWRD (plus any £amount up to 20) to 70085.

To donate direct to the Children’s Heart Surgery Fund visit https://www.chsf.org.uk/donate/.

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