I am completing a 7000ft skydive in February to raise money for the Children’s Heart Unit Fund (CHUF) at The Freeman Hospital and to raise awareness of congenital heart disease (CHD) to support this amazing hospital.

Here’s Lucy’s story so far….

Lucy has recently turned eighteen having been born with undiagnosed complex congenital heart disease and suffered a cardiac arrest at nine days old requiring major life saving open heart surgery due to three VSDs (holes in the heart) and coarctation (severe narrowing) of the aorta. She has subsequently underwent a further four lifesaving open heart surgeries before the age of six.

At the age of five months old she suddenly became unwell again with breathing difficulties and was taken to theatre for an emergency bronchoscopy. During this procedure she took a turn for the worse and was ventilated in the PICU for four months after discovering she had bronchomalacia, tracheomalacia and a third degree subglottic stenosis (three severe narrowings of her airway and trachea) requiring an emergency tracheostomy to again save her life. Lucy had the tracheostomy for four years with the potential of a major reconstruction of her airway at the age of twelve, thankfully she avoided this and the stenosis improved on its own by the time she had turned four, an absolute miracle!

She received a permanent pacemaker at the age of six for post surgical complete heart block due to reoccurrence of the coarctation and has had four pacemaker replacements in total. Developing leaking mitral and aortic valves that are still present and under close monitoring today.

When Lucy was fifteen she began having syncope episodes and started to faint after walking just a few steps. Two years of investigations discovered that she had developed pacing-induced cardiomyopathy with dilation to the left ventricle and a poor heart function. The atrium and ventricles being out of sync meaning she needed a further pacemaker upgrade from two leads to three to try and reduce the pressure on her heart and improve her function. Her amazing consultant Dr Sellars had her in theatre as priority to try and avoid a transplant discussion but unfortunately Lucy had a bleed in theatre of November 2023 where a two hour surgery turned into almost eight hours and she had to return in the new year to try the surgery again because of the trauma in theatre the leads weren’t quite where they needed to be to take the pressure off her heart. This was undoubtedly the scariest time of our lives and was a race against time to save her life.

We returned to Freemans in the new year of 2024 and again by an absolute miracle and the unquestionable skill and expertise of Dr Sellars and his team, Lucy’s heart function had begun to improve and we no longer were discussing transplant!

Her heart function continues to remain stable under very close supervision and will require multiple surgeries and monitoring for the rest of her life and avoid transplant.

As a gesture of gratitude for my daughter’s life as she transitions into the adult services it’s only right that I push myself out of my comfort zone by completing a 7000ft skydive to say thank you for the exceptional standard of compassionate care and unwavering support we have received as a family from this incredible hospital and its dedicated team within the Children’s Cardiac Services who we could never even begin to repay for the gift of Lucy’s life as she studies to become a biomedical scientist with the aspiration to venture into the research field to help so many children like herself. We are so incredibly proud of her and know she will bring hope and faith to all the other heart warriors and their families who walk this path alongside us.

CHUF’s mission is to make life better for children and young people who are born with or who develop heart conditions by providing lifelong support to them and their families. Chuf supports children and families who receive treatment at the Children’s Heart Unit based at the Freeman Hospital and the many other hospitals providing care for cardiac patients throughout the North of England.