Fundraiser of the Month: Lil Louie Big Heart

Jess and Callum, parents to heart warrior Louie, organised a Family Fun Day in August this year August.

To raise even more funds for CHSF, friends decided to also incorporate a sponsored bike ride too!

Jess told us a bit more about Louie’s story and how it inspired their family to fundraise for CHSF…

“On 22nd November 2024, our beautiful boy Louie was born. We had no idea what lay ahead.

“Just two days later, we noticed Louie breathing rapidly. Instinct kicked in – we called his Nannie, who didn’t hesitate. We rushed him to A&E. The first doctor reassured us he was fine, but thankfully a second doctor immediately realised the severity and rushed Louie into resus.

 

“He was treated for suspected sepsis, but things didn’t add up. Later that night, our world changed when doctors told us there was something wrong with Louie’s heart. Around 4am, we were blue-lighted to Leeds Children’s Hospital by the incredible Embrace transport team. It was terrifying.

 

“At Leeds, we learned Louie had Total Anomalous Pulmonary Venous Drainage (TAPVD) – a rare congenital heart defect where the veins carrying oxygen-rich blood from the lungs don’t connect properly to the heart. It causes dangerously low oxygen levels and can quickly lead to heart failure if untreated.

“At just 4 days old, Louie needed open heart surgery. He was placed on a ventilator in Paediatric Intensive Care Unit (PICU), where he stayed for weeks. One night, we received the call every parent dreads – our little boy had to be resuscitated.

 

“Eventually, Louie was moved to High Dependency on the children’s heart ward (L51), though complications meant he was often back in PICU. He also needed further surgery to have his diaphragm sewn down.

“That first Christmas was spent on Ward L51. Nannie brought homemade Christmas dinner and treats – we tried to make it special despite everything.

 

“We were discharged on 27th December, but within just 30 minutes of being home in Scunthorpe, Louie declined again. We rushed back to our local hospital and were admitted to HDU. Just days later, the Embrace team returned us to Leeds.

 

“Louie seemed to be improving, until tests revealed he needed another life-saving surgery – to remove part of his left lung and repair his heart again. There was no ‘plan B’. Within an hour of hearing the news, he was in theatre. Our family rushed from across the country to be by our side.

 

“Thirteen hours later, the call came: Louie had survived. He was critical but alive.

 

Step by step, Louie fought through – ventilator off, drains out, pacing wires removed, chest finally closed. He moved from PICU back to L51, and later to the respiratory ward. With only a quarter of his left lung remaining, he needed extra time and oxygen support.

“On 17th March, after nearly five months in hospital, we finally brought Louie home – for real this time. He came home with oxygen and an NG feeding tube, but he was home.

 

“Since then, Louie has continued to amaze us. His oxygen levels are improving, and we’re hopeful the feeding tube won’t be needed for much longer. He’s started weaning and loves his food – each step is a little miracle.

 

“This journey has tested us more than we could ever imagine – but through it all, Louie has been our light. A warrior. A miracle.

 

“We are endlessly thankful to everyone at Leeds Children’s Hospital, Children’s Heart Surgery Fund (CHSF) and every doctor, nurse, porter, cleaner and support staff who carried us through.”

Lauren Procter, CHSF Community Fundraiser said:

“Jess’ family and friends really got behind their fundraising goals and it certainly shows. We are so thankful for this amazing amount raised – £8,405 currently on their JustGiving page! If any other heart families would like to know more about organising your own fundraiser, get in touch with the team as we’re on-hand to help and support!”

Feeling inspired?

Have you got a fundraising idea or want to chat through how you can help CHSF? Drop us an email at info@chsf.org.uk!