Mum and Dad, Jessica and Craig Fisher decided to take on the challenge to raise awareness of the rare disease, which sadly resulted in the death of two of their children, Koa, who was 13-weeks-old, and Lando, who was 10-weeks-old.
Koa and Lando were treated at the East Midlands Congenital Heart Centre (EMCHC), based at the LRI. Remy, who is two-years-old, is also under their care.
Jessica and Craig completed the 48-hour journey over the bank holiday weekend in a single continuous walk, starting in Saxilby and making a stop at the Rainbows Hospice in Loughborough before reaching the LRI, where they were welcomed by colleagues from the EMCHC.
After completing the walk, Jessica said: “Thank you to everyone who supported us on this incredible journey. We have been absolutely overwhelmed by the love, encouragement and generosity we received. Together we have raised over £17,600 so far, which will go towards vital research into congenital heart disease.
“There will never be enough words to express my gratitude to all the teams involved in caring for my children. Through our efforts, we hope to help improve outcomes for other children living with and being diagnosed with congenital heart disease, including Koa and Lando’s brother, Remy, who will require ongoing intervention throughout his life following his own diagnosis.”
Koa, Lando and Remy share a rare, unidentified alteration in the Elastin (ELN) gene, which can lead to congenital heart disease. The gene alteration currently has no formal diagnosis, meaning that their children have the only known confirmed diagnoses in the world.
Eileen Peasgood, who is the Network Lead Nurse for the East Midlands Congenital Heart Network, said: “Raising awareness of congenital heart disease is essential. CHD is the most common birth defect, yet many people still don’t realise how complex and varied it can be.
“Early diagnosis, access to specialist care, and ongoing support for families can make a significant difference to outcomes. By sharing their story and walking in memory of their sons, Jessica and her family are helping to bring much needed attention to CHD and the urgent need for further research. Particularly into rare and less understood genetic causes like ELN.”
The money raised will go towards funding vital research into CHD as well as Rainbows Hospice, which supports families with life limiting conditions and end of life care.
To support the Fisher family’s mission, or learn more about their journey, visit Jessica’s Instagram page @jess.with.three.poorly.hearts