Rosie and Michael Littlewood running the marathon in April in a bid to raise money for Evelina Children’s Heart Organisation (ECHO), Evelina London and the British Heart Foundation for their son Louis.
Louis was born with a severe heart defect known as Tetralogy of Fallot, which was diagnosed when Rosie was 20 weeks pregnant.
At the time both parents were also carers for their first child Poppy, who was diagnosed with Cystic Fibrosis after her birth.
“It was a lot to take in,” Rosie explained. “There was a lot of up and downs during the time that Louis was being tested and there was a number of potential conditions it could have been so there was a lot of uncertainty.”
The condition prevents the heart from pumping blood around the lungs and body effectively, and is diagnosed in around one in every 3,600 births in the UK according to The British Heart Foundation.
Louis was born at 36 weeks in hospital, where he received immediate oxygen support and spent the first seven weeks of his life in intensive care.
But despite receiving oxygen support, Louis’s oxygen levels continued to drop, which meant Louis had to undergo open heart surgery at seven weeks old – earlier than originally planned.
Speaking on the support the family received, Rosie said: “Our lives were turned upside down.
“Louis was very poorly at the time and it was a very difficult time, and we were also caring for our other child who also had a very challenging condition.
“The staff at Evelina were just phenomenal and I can’t express how wonderful they was throughout the whole process.
“Evelina and ECHO really made it as easy a process as it could be for all of us.”
Since the surgery Louis has returned home to his family, although Rosie told the News Shopper that his treatment will remain ongoing for some time to come, due to the complexity of his condition.
Rosie said: “it’s not really been as simple as just heart surgery and then everything’s been fine.
“It’s been very up and down around that and still is.”
Rosie described the process of having two children diagnosed with such complex conditions as “a grieving process”, one that doing the London Marathon helps her and her husband to process.
“Overnight you go from being first time parents and trying to enjoy a newborn bubble, to then being full time carers and having to completely learn a very intense medical condition, a life-limiting, life-changing medical condition.
“But with Louis we knew about his condition due to testing before birth, and it just feels like those newborn days were stolen in a way because he needed so much care in hospital.
“But fundraising and doing things like the London Marathon makes you feel like you’re doing something, because you feel so helpless in these situations.
“So it’s nice for us to do something good and be giving back.”
Rosie and Michael are currently training for the London Landmarks Half Marathon in April, before taking on the larger London Marathon next month, with the aim to raise £8,000 for the three charities.
This marks the second time they’ve taken part in the marathon, after previously running to raise money for charities who support those living with Cystic Fibrosis.
Speaking on the lead-up to the marathon, Rosie said: “I’m very nervous, training for a marathon with two children was definitely ambitious.
“Especially to be eight months postpartum at the time of the marathons after an emergency C-section and after a very traumatic birth was ambitious.
“But I’m determined to do it.”
Rosie added that for her and her husband, their children were their main source of inspiration, watching them overcome the challenges their health conditions pose on a daily basis.
Rosie said: “People ask us how we do it, training for a marathon with two children with complex medical needs.
“But honestly our children are our inspiration, as they’ve gone through so much, and we just say to ourselves if they can do it and still have a smile on their face, then we can do this for them.”
