A cycling team of Dairygold colleagues are taking on the length of the Leeds Liverpool Canal this weekend to raise funds for CHSF. Their inspiration? Heart warrior, Francis!
Named the “Tour De Francis” Dairygold Cycle Ride 2024, the team will cycle the 127 miles from Liverpool to Leeds on 17-19 May.
The group is made up of Stuart Moore and his son Danny, Matt Lawton, Phil Halliwell, Sean Cotter, Jim Grieve and Nathan Bradshaw.
Francis’ mum and dad, Abbie and Ash, tell us a bit more about their son’s journey so far…
“Francis was born in 2015 with a condition called Heterotaxy. This affects many of his internal organs including his stomach, kidneys, liver and spleen but mainly his heart.
“It was noticed on our 20-week scan that Francis’ stomach was not where it should have been and was poking through a hole in his diaphragm. They also noticed several problems with his heart, meaning he had a single-ventricle heart.
“This was heart-breaking news. Being first time parents, we were thrown into the world of caring for a medically complex child who we were told may not survive.
“As the weeks passed and we attended more scans his chances of survival looked more promising, and plans were made for his arrival by the medical teams.
Heterotaxy syndrome is a rare condition where many organs in the chest and abdomen are formed abnormally, in the wrong position, or are even missing. (The beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.)
Many children with Heterotaxy syndrome have complex congenital heart defects (CHD), which often make the condition challenging to treat.
“On the 3rd March 2015 we finally got to meet our gorgeous boy and at 3 days old he had his first of many surgeries, this one to repair his diaphragm and stomach. We were relieved to find out his heart was stable enough for him not to need surgery straight away.
“After 8 weeks on the neonatal ward, we got to take Francis home! He was tube fed through a gastrostomy feeding tube and on many medications.
“When Francis was 5 months old, he was admitted to the LGI for his first open heart surgery. After 6 weeks in hospital Francis was allowed home again.
After his first open heart surgery, Francis had six-monthly echocardiograms (echo’s) and other tests and treatments to keep a close eye on his heart function.
“But his heart was not fixed, and never will be. It is impossible to create a normally functioning heart without a full transplant for children with Francis’ condition.
“Over the next few years Francis underwent kidney and eye surgery, six-monthly cardiac echo’s and other tests and treatments to keep a close eye on his heart and kidney function.
“Francis’ main struggle has been his low oxygen levels due to his blood mixing in his heart. With oxygen levels of around 75%, Francis found most day-to-day tasks difficult, even climbing the stairs was a real challenge.
“When our closest friend asked if he could choose a charity close to us to raise money for, there were no question that Children’s Heart Surgery Fund deserved every penny.”
“But most heartbreakingly for us, was watching him unable to keep up with friends.
“He can’t play outside at school during the colder months and when he can he often finds himself alone as can’t keep up with the others.
“In February 2024, Francis was admitted to Leeds Children’s Hospital once more for his next open heart surgery, the Fontan.
“Throughout our stay on the cardiac ward the whole team were unbelievable in caring for Francis, and us. They supported, cared for and encouraged him every step of his recovery.
“After a long three weeks fighting to have his chest drains removed, he was discharged one day before his 9th birthday!
“Francis now has oxygen levels in the high 80s to low 90s, meaning his quality of life will be improved immeasurably.
“When our closest friend, and Francis’ favourite person, asked if he could choose a charity close to us to raise money for, there were no question that Children’s Heart Surgery Fund deserved every penny.
The Fontan procedure is open heart surgery. Often, it’s done as the third of three surgeries to treat certain congenital heart conditions. Francis had his Fontan surgery in February this year.
“They fund not only life-saving medical equipment but toys, books, games consoles and much more for the children’s cardiac ward. They also support the families of cardiac patients, not only emotionally but also financially during hospital stays.
“Their contributions and care were stand-out throughout our stay.
“We would be so grateful for any contribution to show our thanks and support to this amazing charity that has, and continues to bring hope, love and care to families like ours.”
We’re so grateful to this terrific team for choosing to fundraise for CHSF in this way. What an inspiration you all are!
To get behind the ‘Tour De Francis’ riders, visit their JustGiving page at: www.justgiving.com/page/stuart-moore-1711396942465
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