Finley Kenneth Peirson was born in July 2022 and was rushed straight to Scarborough’s Special Care Baby Unit with a suspected infection. Over the weeks that followed, Finley deteriorated and was put into an incubator.
One of the doctors detected a heart murmur and this was confirmed by one of the cardiologists. Finley and his parents were immediately blue-lighted to the Leeds Congenital Heart Unit (LCHU).
Finley was diagnosed with Supracardiac total anomalous pulmonary venous drainage (TAPVD) and required open heart surgery as soon as possible – his parents were told it would take place within days. Children’s Heart Surgery Fund (CHSF) supported Finley’s family throughout the 11 days that Finley was at the LCHU, even providing Finley’s mummy and daddy with accommodation within the hospital.
Mum Tamra said: “It was a godsend as I’d only had surgery myself, just days before and I was in a wheelchair and couldn’t walk, let alone drive and travel to and from Malton. As first-time parents, we never imagined anything like this to happen when thinking about having our baby boy.
“We owe so many people a massive thanks, especially Carin Van Doorn and her team for accomplishing the operation and saving our baby boy’s life. Multiple members of staff from all the CHSF wards looked after Finley for the 11 days he was in Leeds.”
“Wear Red Day is a very special day for us as a family, as it is to many other heart families. It gives us a special day to embrace what we’ve been through and to remind people they are not alone. Heart conditions are more common than most realise with 13 babies being diagnosed with a CHD every day – which means we should understand and learn about them. This day is about showing our heart warriors they should not hide their scars – they are part of who they are and they should celebrate that.
“Children’s Heart Surgery Fund gives us families a centre hub to connect with one another and support one another. Without CHSF raising funds and supporting the children’s cardiology department, we wouldn’t have vital equipment for our poorly children to help them survive.
“So please support them by raising as much money as possible so future poorly children can also thrive just like our little man Finley does now, today.”
Wear red in Feb for the thousands of children in our region like Finley!
Sign up to take part in Wear Red Day this February to raise vital awareness of congenital heart disease, and life-saving funds for CHSF!
Unable to do your own Wear Red event this month?
Donate online to our Wear Red Day 2025 Justgiving page
Donate by text: Text CHSFWRD (plus any amount up to 20) to 70085(e.g. To give £5 text: CHSFWRD 5 to 70085)
[Texts cost the chosen donation amount plus one standard network rate message]
Louie’s heart condition was detected at mum, Rebekkah’s, 20 week scan.
Louie would need life-saving surgery at Leeds after he was born and CHSF were there to ease the family’s experience, providing vital assistance and comfort throughout Louie’s treatment and recovery.
Louie’s mum, Rebekkah, said:
I remember finding out at 20 weeks pregnant that Louie had a heart condition and I felt like my whole world fell apart.
The weeks leading up to his birth were very traumatic. We suffered from PPROM at 26 weeks, and Louie was born at the LGI at 33+6 weeks.
Preterm premature rupture of the membranes (PPROM) is a pregnancy complication. In this condition, the sac (amniotic membrane) surrounding the baby breaks (ruptures) before week 37 of pregnancy. Once the sac breaks, you have an increased risk of infection.
Louie was born with a heart condition called Coarctation of the aorta.
From then on, all the teams made us feel so at ease. Louie had to grow quite a lot until he could have his surgery, and it took 9 weeks before he was ready.
Children’s Heart Surgery Fund were amazing with us from day one! They visited us, did welfare checks, made sure we had everything we needed. They made sure that not only Louie was ok, but us as parents and our other two children at home were ok too.
“CHSF were amazing from day one! They made sure that not only Louie was ok, but us as parents and our other two children at home were ok too.”
CHSF also provided us with food vouchers and helped with cost of fuel as well as helping with accommodation when we had nowhere to stay, as we were miles away from home.
Louie had his operation and recovered amazingly; he actually came home 6 days post op!
He is now a bubbly, bright little boy with so much energy and is just lots of fun to be around. We are so thankful to CHSF for all they did and continue to do for us!
CHSF are still so supportive now and made the whole experience that little bit easier for us.
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Louie every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
When Ebony was born in September 2023, her congenital heart defect went undetected until she started to get very poorly at just over a week old.
Ebony was ‘blue-lighted’ from Scunthorpe to Leeds, where she had emergency heart surgery to save her life…
Ebony’s mum, Courtney, said:
“Our little girl was born on 13th September 2023 and we were sent home thinking everything was fine. 8 days later however, she went downhill very quickly. She turned purple and couldn’t breathe properly.
“We rushed Ebony to our local hospital in Scunthorpe where they told us they didn’t know what was wrong and we should prepare for losing our daughter.
“They did a scan of her heart, and they knew that the heart wasn’t working the way it should. We were then transferred to Leeds by Embrace. Our little Ebony’s organs had started to shut down and was still very touch and go if she would make the journey.
“Once at Leeds we were informed that Ebony had hypoplastic left heart syndrome and coarctation of the aorta as well as two holes – one in the top and one in the bottom.
“Without CHSF our time in hospital would have been a whole lot worse. We will be forever thankful.”
“When we were told this our world stopped. We had no idea what this meant or where we needed to go from that point.
“We met with surgeons and consultants in Leeds and we were informed that she would need open heart surgery to survive (Norwood procedure), but Ebony developed an infection which delayed the surgery.
“We were in PICU (paediatric intensive care unit) for a total of 11 days before we got the go ahead to have the operation. Because of how poorly Ebony had become we didn’t know what the outcome of the surgery would be…
“On 2nd October 2023, Ebony had a 7-hour operation and absolutely smashed it!!!
“Once out of surgery there were a lot of complications and a lot of up and down days, but a miracle happened and she started to get better!
“After a solid week of up and downs we got the clear to move onto Ward 51’s (children’s heart ward) high dependency unit (HDU) from PICU. I thought we were never going to get there.
“It wasn’t as straight forward as we had hoped but after 9 long weeks we were discharged and allowed home.
We are now in the process of getting ready for Ebony’s next surgery – her Glenn – around March 2024 time. So, it’s all systems go but Ebony is doing amazingly well and constantly has a smile on her face.
“Without Children’s Heart Surgery Fund our time in hospital would have been a whole lot worse. We will be forever thankful for all the hard work and the dedication from the team.”
13 babies are born every day in the UK with a heart defect, making CHD the most common birth defect.
In our region alone, Children’s Heart Surgery Fund is there for over 17,000 babies, children and adults like Ebony every year, who are living with a heart defect. We’re there to support their families too!
Help us to raise vital funds this #HeartMonth, by making a donation to our essential and life-saving work. Thank you.
“In February 2023, Barnburgh Primary School held their first ‘Wear Red’ fundraiser in support of Children’s Heart Surgery Fund. The idea to do it began when one of our Year 5 pupils told her friends all about her little brother, Theodore. He attends our nursery and was born with a congenital heart defect.
“Theodore’s sister and her group of friends set about thinking of ways to raise money to help children and babies like Theodore, and had the idea of making and selling loom band jewellery in school.
“His sister then remembered about Wear Red Day, which she had participated in before and her friends were excited to find out if Barnburgh Primary School could do something similar!
“Two of the girls arranged a meeting with Mrs Potts, the Headteacher, and explained what they wanted to do and why. It was agreed that our School Council would meet to discuss the idea and then consult with their classmates. Eventually it was unanimously decided that Barnburgh Primary School would become fundraisers for CHSF!
“The next step was to arrange our first ever Wear Red Day. Our school council decided to launch our fundraising efforts with a special assembly to explain to the children all about the work of Children’s Heart Surgery Fund.
“Theodore, his sister and two of her friends from the school council gave a fantastic presentation about CHSF and CHD alongside Eve from the charity who kindly offered to attend. We even had a special surprise visitor – Katie Bear herself (CHSF’s mascot)! The children were so excited.
“CHSF were extremely helpful in helping us to plan our fundraiser. We sent a letter to families explaining about CHSF and why we wanted to raise money for them.
“Our junior librarians resourced some books about congenital heart disease and heart surgery and created a special display in our school library.
“On our Wear Red Day itself, the Year 5 pupils started the day with a loom band jewellery stall on the playground – they sold out in record time and had to quickly make more bracelets over the weekend so they could re-open their shop the following week!
“Every class looked fantastic in their red outfits and we had lots of fun during the day. Theodore’s own Katie Bear visited each class and we took lots of photos.
“In total we raised £353.08 for CHSF which is fantastic for a school of our size. It was brilliant to see how involved the children were with the fundraiser and we look forward to planning next year’s event!”
Wear Red Day is the biggest event in our calendar that generates vital, life-saving income for our charity to support the Leeds Congenital Heart Unit, it’s patients and their families.
From red raffles and bake sales, to getting your whole school or workplace involved, what could you do to raise some extra £££’s for CHSF this Wear Red Day?
Will your child’s school or nursery be joining in?
We have put together a
downloadable letter templateto make it super-easy to ask about taking part in Wear Red Day this year. All you need to do is fill in a few details and give it to a school/nursery decision-maker!
Download our free letter tempate hereEliza-Rose has had three open heart surgeries at the Leeds Congenital Heart Unit and isn’t even two. Mum Charlotte and dad Ben told us a bit more about Eliza-Rose’s journey with CHD so far and why they think it is important to support Wear Red Day…
“Eliza-Rose was diagnosed with a congenital heart defect at 20 weeks called Pulmonary Atresia with a ventricular septal defect. She underwent open heart surgery at just 11 days old to fit a BT Shunt.
“After being at home around two weeks, Eliza-Rose was re-admitted to Ward 51 with a really bad wound infection. This led to Eliza-Rose having her chest open for two weeks, and a seven week stay in hospital.
“Eliza-Rose is now 17 months old and has not long since had her third open heart surgery.
“Wear Red Day is very important to us and all the other heart families out there. It’s a day that helps to celebrate all the heart heroes.
“It means a lot to us as we know some of the money raised at events and fundraisers like this has contributed to the support we have received and the care that Eliza-Rose has had, and will continue to need throughout her journey.
“We are so grateful for everyone who wears red and supports Children Heart Surgery Fund!”
Wear Red Day is the biggest event in our calendar that generates vital, life-saving income for our charity to support patients like Eliza-Rose, their families and the Leeds Congenital Heart Unit.
From red raffles and bake sales, to getting your whole school or workplace involved, what could you do to raise some extra £££’s for CHSF this Wear Red Day?
With your help, we asked press from all across Yorkshire, North East Lincolnshire and The Humber – to help us turn the region red and celebrate Wear Red Day 2023. And they didn’t disappoint!
News spread across our counties about Children’s Heart Surgery Fund, congenital heart disease and our tremendous heart community. Here’s a round-up of the online stories YOU created to help us raise vital funds.
Leeds mum had to do CPR on her three-year-old son who collapsed and ‘went blue within seconds’.
Three-year-old Daniel Terry appeared to be ‘absolutely fine’ on his way home from school with his mum in June 2022.
Mum of brave Leeds boy who had open heart surgery at six months old is on a mission to help others.
Thousands of people will wear red this week to raise money for Leeds Children’s Heart Surgery Fund.
YORK mum Danielle Tupman and son Oliver thank Children’s Heart Surgery Fund by wearing red.
CHSF helped them through a ‘nightmare experience’ when Oliver needed emergency surgery as a baby.
YORK mum Danielle Tupman and son Oliver thank Children’s Heart Surgery Fund by wearing red.
CHSF helped them through a ‘nightmare experience’ when Oliver needed emergency surgery as a baby.
Yorkshire charity turns the region red in support of congenital heart disease.
Wear red to help raise money for children like little Archer Jak from Batley who had open heart surgery at just five months old.
Sheffield mum ‘devastated’ as brave little girl ill since birth hit with new infection.
The infection spread to her lungs and the left one collapsed. Mum asks for donations towards Wear Red Day 2023.
Doncaster hero heart Harley battles through tough start to life.
This Friday is the annual Wear Red Day and the Free Press has teamed up with CHSF to bring you this great news story.
Brave five-month-old baby boy undergoes open heart surgery after doctors almost missed a serious problem.
Doctors believed he had a simple heart murmur at first.
Chesterfield school’s personal reasons for supporting CHSF.
Children at a Chesterfield school backed a cause close to their hearts by supporting Wear Red Day.
St Oswald’s Primary School in Guiseley Wear Red for heart charity.
They held a fundraising day as a thank you to Children’s Heart surgery Fund that has helped one of their pupils.
Moorfield pupils wear red for the Children’s Heart Surgery Fund.
Children at Moorfield School and Nursery, Ilkley, took part in Wear Red Day on February 3 to raise money for Children’s Heart Surgery Fund.
Give yourselves a round of applause! Your fundraising on Friday 3rd was incredible – and we appreciate money is still coming in. Thank you!
Don’t forget to share photos of your Wear Red Day fun with us on social media, using the hashtag #WearRedDay or email your photos to us at info@chsf.org.uk.
There’s still time to donate online via Just Giving. Still need to pay in your Wear Red Day fundraising? You can do that here.
“Without Children’s Heart Surgery Fund, Reggie wouldn’t be here.”
Michelle, Reggie’s mum
Written by Reggie’s mum, Michelle
Reggie was born on the 1st September 2016 with a palliative congenital heart disease called hypoplastic left heart syndrome. Although you might not know to look at him, Reggie’s heart is extremely poorly.
When we had his diagnosis at 20 weeks, we were given three options: abortion, comfort care or surgery. We chose surgery as we needed to let him have that chance.
Congenital heart disease is the biggest childhood killer, and Reggie is high risk for things like stroke, cardiac arrest, endocarditis…
Although we knew the possible outcomes, we still wanted to let him have the chance. We say that it’s his fight. When he’s tired, that’s his choice to stop! We will guide him as much as we can.
At four days old, Reggie needed his first open heart surgery. The operation was nine hours long. After three days, he needed to go back to theatre and be opened up again due to an infection. He came home in October, just in time for his mummy’s birthday.
In March the following year, Reggie needed another open heart surgery. He was so strong, but he had a really tough time with another infection, this time in his PICC line. We were home after eight days.
It hurts every day knowing that this CHD could just randomly take him unexpectedly or that when he needs a transplant, will he manage to hold on?
Imagine waking every day knowing it could be your child’s last.
Now age 6, Reggie is waiting for his final surgery.
He’s been on the list for the last year, but we haven’t had the call just yet with COVID and new babies being born with CHD that have taken priority.
Children’s Heart Surgery Fund are amazing. If you could donate this Wear Red Day, even if it’s £1, it will go towards saving a child like Reggie. Thank you.
Please register to take part in Wear Red Day this year, so you can help us raise vital fund and awareness to support children like Reggie. Thank you.
Want to fundraise on Wear Red Day but not sure what to do? Maybe you can’t take part on the day but still want to fundraise…
Join the Red Mile challenge!
We challenge you to run, walk, swim or cycle the distance of one mile while wearing red on Wear Red Day, or one day in February for Heart Awareness Month.
By taking on the RED MILE you will be raising awareness of congenital heart disease as well as generating vital funds to support hearts for life.
You can join in the challenge by registering for Wear Red Day and opening a JustGiving page.
Remember to share your activity with family, friends and colleagues and ask them to sponsor and support you in your Red Mile challenge!
It can be as simple as walking the dog or walking to school or work. You could even add the mile to your daily run, walk, swim or cycle.
Lets put some fun into fundraising and rock your red by completing a RED mile your way, anytime on Friday 3rd February, or during the month of February!
Wear Red Day is a fantastic annual event that generates vital, life-saving income for our charity to support the Leeds Congenital Heart Unit, our patients and families.
Yorkshire turned red this year with support from all across the region’s press
This year marked the 10th anniversary since Wear Red Day was created in February 2012. With your help, we asked press from all across Yorkshire – and further afield – to help us celebrate the occasion. And they didn’t disappoint!
News spread from Leeds, Halifax and Bradford all the way down to Kent and Devon about Children’s Heart Surgery Fund, congenital heart disease and our tremendous heart community. Here’s a round-up of the online stories YOU created to help us raise vital funds.
The mum of 17-week old Charlie urged everyone to support Wear Red Day with this story. Charlotte Hillyard praised the “truly amazing” care of the cardiac team at Leeds Children’s Hospital and urged people to fundraise and “wear red” in their honour.
About CHSF, Charlotte said: “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.”
Story by Joanna Wardill at Yorkshire Evening Post
Heart hero Luca is a pupil at St Oswald’s Primary School in Guiseley, and his mum Lindsay and reception class teacher Katy Miller were inspired to organise a Wear Red Day fundraiser for Children’s Heart Surgery Fund.
Lindsay said: “The help and the support we have felt as a family right from Luca’s first operation at eight days old to the introduction to other heart families going through their own heart nightmare from the CHSF is amazing.”
Story by Daniel Sheridan at The Yorkshire Evening Post
Savannah was in intensive care for several weeks and wasn’t allowed home until she was three months old.
Savannah Simpson-Grant is now approaching her second birthday thanks to the “wonderful” work of CHSF says mum Fran. Her pregnancy was fraught with worry after she was told by specialists that her daughter had developed congenital heart disease and a number of serious issues.
Fran said: “As a family Wear Red Day is so important to us to help raise vital funds and awareness for the congenital heart disease (CHD) community. Almost 1 in 100 babies are born with CHD and awareness is so little – we need to make it known.”
Read the full story at Leeds Live
Leigha-Mae
Max
Evelyn
Leigha-Mae Stones, aged six, from Newbold, was diagnosed at birth with multiple heart conditions including a hole in the heart. She had to undergo two surgeries at the LCHU, the last of which was open heart surgery in August 2021.
Read Leigha-Mae’s story in The Derbyshire Times
Max, aged two, who lives in Hipperholme, had open heart surgery at just four weeks old. His condition of Truncus Arteriosus was diagnosed following an anomaly at Amy’s 20 week scan, and the family were referred to the LGI.
Read Max’s story in The Halifax Courier
Fellow heart hero Evelyn has had three major heart operations – at four weeks old, seven months old and five years old. Her most recent surgery was in February 2020.
Read Evelyn’s story in The Bradford Telegraph & Argus
George was born with a heart condition called Transposition of the Great Arteries (TGA), meaning his heart’s main arteries were the wrong way around. Mum Keren spoke about the difficult moments she and George spent isolated and away from the rest of their family during the pandemic while he was being treated.
Read about George at The Huddersfield Examiner
And last but not least, two Harrogate pupils – Henry and Alex – encouraged people at their local school to wear red in support of CHSF. Both boys are firm friends, and have done so well in raising awareness and funds for charity!
Read about Henry and Alex at The Harrogate Advertiser
Henry and Alex complete with Katie Bear who was given to Henry by the Leeds Congenital Heart Unit
Wear Red Day is over for another year and what a day we had celebrating with you all!
Don’t forget to share photos of your Wear Red Day fun with us on social media, using the hashtag #WearRedDay or email your photos to us at info@chsf.org.uk.
Still need to pay in your Wear Red Day fundraising? Click here
MORE LATEST NEWS
Mum of little heart hero Charlie urges city to support ‘Wear Red Day’ and raise vital funds for Leeds congenital heart unit.
The mum of a 17-week old baby who has a rare heart defect has praised the “truly amazing” care of the cardiac team at Leeds Children’s Hospital and urged people to back an annual fundraising drive to “wear red” in their honour.
Yorkshire Evening Post
By Joanna Wardill
Monday, 31st January 2022, 4:45 am
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 Hillyard’s baby boy Charlie, pictured recovering from open heart surgery at Leeds Children’s Hospital, where he has been since he was born.
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.”
Charlotte Hillyard’s baby boy Charlie, who has been in Leeds Children’s Hospital since he was born.
Kippax Greenfield Primary School taking part in Wear Red Day last year. Picture: James Hardisty, YEP
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 surgery. 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.