Harry’s Story

Joel + Harry

SPOILERS – Harry is fine and was discharged from follow-up appointments in December 2018! Given it’s bit of a grim story at times, we’ve interspersed proof of this in the form of cute baby pictures throughout this page. If you want to know more about the things on this page, or you just prefer videos to reading, the family featured on a documentary Kid’s Hospital at Christmas which is now on Youtube.

In 2013 an ultrasound on Harry’s mum, Amy, revealed that he had a large tumour attached to his spine. What followed was two months of hell for Joel and Amy. Amy’s care was transferred to the Royal Manchester Children’s Hospital and she was regularly scanned to ensure Harry’s development was progressing as expected and the tumour wasn’t introducing further complications. Early on it was identified that Harry would need intensive care from birth, as it wasn’t clear how the tumour would affect him once he was born. Because of this Amy was induced on December 3rd, following a few nervous hours waiting for an intensive care bed.

From birth Harry was transferred to NICU (special mention to the small army/conga line of NHS staff coming in and out each time it looked like Harry would arrive). Having never had a baby, and left alone with his poorly newborn in intensive care Joel decided to send a picture to Amy to prove just how well Harry was doing. Unfortunately Joel is not a smart man, and his first interaction with Harry was to blind him at 4am with the flash from his phone.

After a week of intensive care and his first MRI, we were able to take Harry home for a couple of days, before bringing him back to have the tumour removed – major surgery. This included removing part of his spine in order to stop the tumour regrowing and potentially becoming much more dangerous. Thankfully this went well and Harry, Amy and Joel were able to go home on December 22nd, the best Christmas present any of them could ask for.

Throughout the entire time the care and support Harry, Amy and Joel received was incredible. We were helped with every part of being the new parents of a poorly baby, and Harry’s care was exceptional.

One story that always comes to mind is one afternoon shortly after Harry’s surgery. Unfortunately his cannula had fallen out, a common problem in babies his age but one which meant he’d need to go for several hours within limited pain relief. Joel was staying with Harry for the afternoon, while Amy got her first sleep in several days (and we’ve already seen Joel’s natural parenting skills with the ‘blind the newborn’ experience)! Harry was understandably distressed, but without medication all that could be done was general rocking and soothing noises.

Thankfully music volunteers were visiting the ward, who saw both Joel and Harry struggling by his bedside. Without a word a duo with a lute and tambourine came up to the bed and gave a genuinely beautiful rendition of ‘twinkle twinkle’ until Harry fell asleep, gave a wink and wandered off to find somebody else to help. It’s a small example but one that shows the way in which people giving their time and effort at such a difficult period of peoples lives can have a huge impact on how they cope, without ever asking for anything in return.

Jake + Harry

People like that are why we're doing this. At the darkest time of their lives the strongest memories Joel and Amy have of their time in hospital is the kindness and support they were offered by complete strangers, often as volunteers. The team cover any costs in doing the challenge themselves, and so every single penny donated goes directly to the departments which have been so crucial for Harry's care over the past five years.

Harry's had numerous appointments since birth, each of which has an ultrasounds and a blood test to check that no part of the tumour is regrowing, and that the organs affected by it and the surgery are developing normally. We're thrilled to say that this will finish on his 5th birthday (a few short months before this ride) and Harry will officially be discharged from the incredible care he's received. But that doesn't end the family's connection to the Children's Hospital - since having Harry, Amy has begun working as a children's nurse on the High Dependency Unit, the same unit Harry was cared for on following his surgery.