Simon Parsons-Kilburn

Rory's heartbeat

Fundraising for ECHO - Evelina Children's Heart Organisation
raised of £2,500 target
by 313 supporters
Donations cannot currently be made to this page
In memory of Rory Parsons-Kilburn
We are there for heart families to provide support at every stage


Thank you everyone

1298 eaised so far! doing so well

now £957!!! We're doing so well keep releasing your chippy monsters and have fun :)

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Rory was diagnosed with 3 congenital heart defects, an unbalanced AVSD, at the 20 week scan.  He was born at 36wks and 3days and spent the first 3 months of his life at the Evelina Children's Hospital in London.  We were told that he wouldn't survive the first month without a band fitted to his pulmonary artery. He survived this operation; and the hospital based infection he caught shortly after.  He got better and was allowed home on the 28th January 2013.  There were a few times where he got grumbly, and would sulk or scream at the top of his lungs, but everyday he had a smile that would light up the room.  It went from the top of his head right to the tips of his toes. We celebrated a late Christmas that year, a few days after Rory got home, just so he could celebrate it. As the months passed, Rory got stronger and grew bigger.  We held a special birthday party for him on his first birthday in October 2013. We were just so thankful that he had made it that far.  He kept growing and getting stronger come Christmas, and shortly after, in early January, he took his first steps unaided, only 4 right into my arms.  I was such a proud daddy.

We knew that as Rory got older, he would have to get the AVSD repaired.  He was getting paler and his blood oxygen level was dropping.  On 4th March 2014 he spent 7 hours in surgery and the holes were repaired, He was so brave and strong, even trying to come round from the anaesthetic early. Unfortunately, to the shock of everyone in the PICU ward, and us, he succumbed to a heart attack on 7th March aged just 16 months. He was a fighter, battling against CHD every single day of his life and doing it with joy in his heart and a wonderful smile on his face that brightened everybody who saw it and knew him.

ECHO is the charity that supports children with heart conditions and their families. This is how they describe what they do on their website:

ECHO’s mission is to provide support for children and young people with heart conditions who receive treatment at the Evelina Children’s Hospital and the outreach clinics at local General Hospitals attended by Evelina Cardiologists. We also extend a lifeline to their family & carers. We are here to provide information, friendship and moral support from infancy to adulthood, especially at times of high anxiety for the patient and/or his or her family/carers as well as to supply equipment to the hospital which will improve the patient/family experience both as an inpatient and at home. Our close working relationship with the hospital enables us to provides vital patient voice to help Guy’s & St Thomas’s NHS Trust shape its services for congenital heart disease.


About the charity

ECHO supports families affected by children’s heart conditions treated by Evelina London, Royal Brompton & Harefield & their networks of specialist local hospitals. ECHO offers practical & emotional support throughout their journey, welcoming them to a community of shared experience & understanding.

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Total raised
+ £484.25 Gift Aid
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