19th September 2020 would have marked Charlie’s second birthday.
Devastated Daddy and volunteer NEWSAR mountain rescue team member Andy Rooke, used his grief to take on one of the UK’s most unique challenges in memory of his son Charlie. During Charlie’s horrific ordeal with the ultra-rare genetic condition Spinal Muscular Atrophy with Respiratory Distress Type 1, ‘The Snowman’ was one thing that bought a smile to Charlie’s face. To honour Charlie’s love of The Snowman, Andy built Charlie a snowman on the top of each of the UK's three peaks.
Andy and Sarah want to do something to give back to Claire House Hospice and raise money for the hospice that went above and beyond when caring for their terminally ill son. They helped make lasting memories and provided respectful and amazing end of life care. In February 2022 (delayed a year due to COVID-19 restrictions), Andy climbed Ben Nevis, Scafell Pike and Snowdon and built a snowman on top of each in the dedication of his son Charlie.
Charlie had a rare genetic condition called Spinal Muscular Atrophy with Respiratory Distress Type 1. He lived beyond his life expectancy of 13 months, unfortunately losing his battle in February 2020 aged just 17 months following a sharp deterioration of his respiratory and autonomic nerve functions. The Snowman film brought him huge joy and put a twinkle in his eye and also comforted Charlie during his final hour of life. He also loved his football club Everton who paid tribute to Charlie on their 1st July 2020 game against Leicester City. Towards the end, only his beloved Igglepiggle could give him cuddles, as moving him would mean his lungs could collapse.
As a huge thank you to Claire House Children’s Hospice for the most thoughtful and important care given in Charlie’s last months, Andy hopes to raise funds to ensure they can do the same for more families in this incredibly difficult position.
A comment from Andy
"I won't let my son suffer and when SMARD progresses, as Charlie's quality of life deteriorates to a point that's unacceptable, I'll know that will be the time to withdraw his care but that's not now'. I vividly remember this conversation, only day's after we'd just lost Thomas, Charlie's brother, born sleeping in Nov 2019. Sarah and I were emotionally exhausted, but we had to carry on for Charlie.
For months we've had excellent support from Claire House Children’s Hospice. The play therapy was good for Charlie but we really needed their help and expertise – not only making memories and giving Charlie positive experiences, but also end of life care.
The day we'd been dreading, had now arrived. Charlie's respiratory system was failing; increased pressure upon his ventilator, multiple emergency tracheostomy tube changes and repeated consolidation collapses of his lungs. I'd been very involved with Charlie's care, performing physio to shift his secretions, tube changes, suction and tracheostomy care, so I knew Charlie's body very well and knew he'd truly deteriorated.
On 21st February 2020, Sarah and I decided against every parental intuition, that it's not in Charlie's best interests to carry on like this. After an unplanned transfer from Alderhey PICU to Claire House for end of life care, here we were swimming with Charlie in their hydro pool. I can't describe how good this felt – to spend one last night together in bed with Charlie.
On 25th February 2020 we had our long-planned trip to the Blue Planet Aquarium - knowing this was our last day with Charlie was gut-wrenching. Later that evening, listening to The Snowman music, Sarah and I both held Charlie tightly as he peacefully passed away, we'd never see those big beautiful blue eye's again. We can’t thank Claire House enough, for looking after us and Charlie both in life and once he gained his angel wings. That is why I want to give back and set up #CharliesSnowman."