Leeds dad gears up for London Marathon after 'wonderful support' from The Sick Children's Trust

Jason Crowley will take on the iconic 26.2 mile course to raise funds after being supported at our Eckersley House 'Home from Home' while daughter Seraphina was being cared for at Leeds General Infirmary in 2015

A dad from Leeds is thanking The Sick Children’s Trust, the charity that provides a welcoming ‘Home from Home’ for families with a seriously ill child in hospital, for its support after his new-born daughter suffered heart failure almost nine years ago.

Baby Sezzie. Credit: Jason Crowley.

After being resuscitated by medical staff at Leeds General Infirmary (LGI) just weeks after her birth in September 2015, Jason Crowley’s daughter Seraphina spent a month in intensive care and a further three weeks in the cardiac unit. Seraphina – affectionately known as Sezzie – suffered a near fatal infection as well as swelling of the heart and her heart rate rocketed to almost 300 beats per minute. Jason said: 

“Sezzie’s first hospital trip came when she was a week old due to weight loss. She soon returned home but it was clear to me and Amy, Sezzie’s mum, that she was still very poorly. A few days later a doctor told us that we needed to take her straight to LGI. 

“As we walked from the car towards the hospital entrance, Amy suddenly screamed ‘she’s stopped breathing’. We rushed into the hospital and Sezzie was immediately taken into A&E and then resus. We soon had to leave while the doctors attempted to resuscitate her, waiting in a side room before a medic explained that Sezzie had been intubated and was in the Paediatric Intensive Care Unit (PICU). We eventually saw her around an hour after arriving at the hospital, a tiny baby covered in wires and tubes, connected to monitors and machines.” 

Sezzie (right) with big brother Seeger. Credit: Jason Crowley.

Seraphina was in an induced coma and faced an uncertain future, with a heart transplant or the use of mechanical cardiac support systems some of the options on the table. Jason described the uncertainty as ‘overwhelming’, with a negative outcome being a very real possibility. However, despite enduring a collapsed lung, blood transfusions and numerous organs being on the brink of failure, Seraphina made a remarkable recovery and is now a happy, outgoing eight-year-old. Jason said: 

“We were all astonished by her improvement, as everything looked so bleak in those first few months. Sezzie has mitral valve regurgitation, which is a very minor leak in her heart that doesn’t significantly impact her overall health. However, because of how unwell she was she still has tests every year or two, just to keep an eye on things.” 

Throughout Sezzie’s time at LGI, Jason and Amy were supported by Eckersley House, a ‘Home from Home’ run by The Sick Children’s Trust which provides families with a place to stay on the hospital site close to their seriously ill child’s hospital bedside. Jason said: 

“The Sick Children’s Trust and their wonderful staff really are unsung heroes. Even though we only lived 30 minutes from the hospital, with Sezzie being so unwell there was no way we could have left her. Eckersley House allowed us to be there while she was quite literally fighting for her life. While Sezzie’s mum and I are no longer together, Eckersley House kept us close to Sezzie and together as a family. It was so crucial for us, including our son Seeger, who was only two at the time.” 

Jason also spoke about a chance meeting with stage and screen legend Michael Crawford CBE, president of The Sick Children’s Trust since 1987, who was visiting Eckersley House. Jason said: 

Stage and screen legend Michael Crawford CBE with Jason and Amy at Eckersley House in 2015. Credit: The Sick Children’s Trust.

“It was the day after Sezzie’s heart rate had reached almost 300 bpm, and we were physically and emotionally drained. Michael was genuinely interested in everyone’s stories, showing compassion and kindness to the families. We had no idea he would be there that day, but I hope he knows what a difference his kind words made to us. He must have helped so many families in that way.” 

To thank the charity for its support, Jason will be lacing up his running shoes and taking on the London Marathon on 21 April to raise vital funds. Jason said: 

“Long distance running is a big challenge for me as I have asthma and back problems, but the training has been going well so far. I completed a 20-mile run recently so I think I’m on track. I’m getting plenty of support from Sezzie, who is just the most remarkable, amazing and kind person. I often receive texts from her when I’m on my training runs. ‘Daddy, do you have food?’ ‘Walk fast!’ All sorts of advice.” 

Jason is one of 14 runners taking on the London Marathon to fundraise for The Sick Children’s Trust’s and its ten ‘Homes from Home’, which support families from across the country while their children are seriously ill in hospital. 

More information about Jason’s fundraising can be found on his donation page by clicking here.

Dad Jason with Seeger and Sezzie. Credit: Jason Crowley.

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