I’m Kathryn, and was (and always be) the mum of two boys – Noah and Oliver. My husband, Lee, and I first welcomed Noah in 2008, and Oliver completed our family in 2013. Very appropriately, Oliver was born on Valentines Day, and will always have a special place in hearts. We all think our kids are special, but Oliver truly was.
Oliver was a whirlwind of a toddler; loved being messy, loud, and adored the water. However, we started to notice him being particularly unsteady and having more trips and falls by the time he reached the age of three. After going through several misdiagnoses, and years of decline, in 2021, when Oliver was 8, we received the devastating news that Oliver, in fact, had Juvenile Amytrophic Lateral Sclerosis (ALS), or Motor Neurone Disease (MND), as it’s more commonly known. It was so incredibly rare for children to get this disease, and even more rare in the fact that, in Oliver’s case, it was cruelly down to a spontaneous gene. So much was unknown about MND in children and the likelihood or pathway towards the ‘end’ that we were ultimately told to ‘hope for the best but prepare for the worst’.
Fast forward a few years, and we sadly lost Oliver, aged 11, in April 2024 after spending several weeks on Paediatric Intensive Care at Bristol Children’s Hospital. The team there were absolutely brilliant, and we were also massively supported by Charlton Farm Children’s Hospice where he peacefully died in a room thoughtfully decked-out in Spiderman colours and memorabilia. Oliver was Spiderman-mad.
We all grieve differently, and since Oliver’s death I have been one of those who tries to ‘keep busy’ – by starting to write a book, doing various fundraising for the Motor Neurone Disease Association (doing at 15000ft-high skydive dressed as Spiderman!), and hikes for the Children’s Hospital, and Hospice. So when my good friend, Jon, started working for The Swan Song Project as a songwriter, I thought what better way to memorialise Oliver. I love music, Oliver loved music, and Noah loves music and playing the guitar. There could be something much more personalised and permanent to let his memory live on.
During our Zoom conversations, Jon was great in gathering all of the various cues we shared about Oliver’s personality and likes in order to help shape what ‘The Amazing’ became. He even asked if it was okay to take some pictures of some of Oliver’s drawings (or ‘masterpieces’). It was lovely to talk at length about Oliver and feel really listened to.
From there we bounced ideas back and forth over the lyrics and melody, and Noah started to practice what the electric guitar part may sound like. Probably the trickiest part was deciding what style to write the song in – Oliver had a very eclectic music taste! Everything from ‘Chop Suey’ by System of a Down to ‘Goodbye Yellow Brick Road’ by Elton John, and everything in between. In the end, we opted for something more acoustic and akin to ‘Blackbird’ by the Beatles, as it was a song Oliver loved (we played it at his funeral…as well as the Spiderman theme tune, and Guns n’ Roses’ ‘Sweet Child of Mine”!). It was also perhaps more suitable for me to sing to rather than attempting to manifest my inner wailing rock child!
Jon made the whole process very sensitive to our needs, relaxed, and easy. On the day of the recording, I was very nervous but, again, Jon was great at calming me… and even exiting the room while I sang at my request! It all happened at our pace, and Jon even took the time to show Noah some of the recording technology and jammed with him out of the room while I was singing my parts. Noah really valued this.
We are so thrilled with the result and how ‘The Amazing’ has captured Oliver’s loving personality and the things precious to him. We even managed to capture his giggle and voice in the song, so he truly is part of it. The result is a lovely tribute to Oliver for friends and family to treasure for ever.
The Swan Song Project is such a wonderful and unique charity that helps people turn something as unthinkable as losing a child, or any precious life cut short, into something beautifully fitting and long-lasting.
I would encourage anyone to get in touch. No matter what your ability, the team are so good at working with you to produce something truly special and distinctive to honour you/your loved one.
We are incredibly grateful, thank you Ben, Jon, and the team.
Kathryn Jones.
Listen to “The Amazing” here
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