written by heart mum, Natalie
We were introduced to the amazing CHSF on 14th April 2022 in Leeds when our daughter, Isabelle, was 5 months old.
We went for a routine hospital check-up in Hull on 12th April with a suspected heart murmur and it was then that we were told Belle had Tetralogy of Fallot (ToF) and Ventricular Septal Defect (VSD).
Fast forward 48 hours and we were seen by the most amazing Cardiology team at Leeds General Infirmary and they explained that without surgery, Belle would only survive into her teenage years.
With all the emotions running through our head we thought we were on a rollercoaster.
“Why us?”, “What did we do to deserve this?”, “Was it my fault? Had I done something wrong in my pregnancy?”.
We agreed to go onto a cancellation list, and Belle had her surgery just three weeks later in Leeds on 4th May 2022.
While we were in Leeds, we were given the details for Children’s Heart Surgery Fund and the private Facebook page they have for patients and families.
The nurses arranged for CHSF to send Eliza, our 5-year-old daughter, a little book about going into hospital. This explained nicely what was going to happen to Belle while she was in Leeds for 5-14 days.
When we got the call on the 3rd May to say a cancellation had come up, we headed to Leeds straight away. We grabbed as much we could from home and attended Ward L51 – and we were absolutely blown away as soon as we went onto the ward.
We were told not to book a hotel as there was accommodation there for us, funded by CHSF. My partner, Jonny, and I just burst into tears. The accommodation we had was lovely and allowed us to be so close to Isabelle while she was on PICU and High Dependency.
It was such a relief knowing we were only a few minutes away if we needed to be with Belle urgently. We had the accommodation for a total of six days which, as well as a bedroom, had a kitchen and laundry room if we needed it.
Also, all children are given their very own Katie Bear with a certificate and medal after open heart surgery. Another beautiful gesture from CHSF.
The reason we decided to take part in the Superhero Walk last year is because we wanted to give something back to this amazing charity. We raised a total of £405 – which could help families like us stay in the hospital accommodation for 14 days.
It was so lovely to meet all the other families at the event and talk to them about our little miracles. It was such a lovely, fun-packed day.
I set up a JustGiving page and shared this on social media with our story. Only a handful of people knew about Belle and her surgery, and our donations started to come in.
If anyone is thinking about doing the Superhero Walk my answer is YES, please do! Jonny, Eliza, Belle and I will be doing it again this year and we can’t wait to meet and catch-up with all the families.
Thank you CHSF from the very bottom of our hearts. We are truly grateful for everything that you do, and carry on doing xxx
Superhero Walk is an annual fundraiser and family fun day. We encourage young heart warriors and families to dress as their favourite superheroes and get sponsored to walk the 1km route!
When?
Sunday 10th September, 11am – 2pm
Where?
John Charles Centre for Sport, Leeds, LS11 5DJ
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