A Merseyside dad has spoken of the pain of losing his two children – one to a rare genetic condition that develops in infants and causes muscle weakness and respiratory failure.
Little Charlie was hospitalised with a partially paralysed diaphragm in May 2019, when he was eight months old. In November of the same year, parents Andy and Sarah Rooke were told their son’s condition was terminal.
He died four months later, in February 2020.
And it was not the first tragedy to strike the family, with pregnant Sarah having lost her unborn baby earlier, in December 2019.
Birkenhead dad Andy, 38, said: “Our son Charlie was born in September 2018 with an extremely rare Genetic condition called SMARD 1 (Spinal Muscular Atrophy with Respiratory Distress type 1). It is a neuromuscular disease with a life expectancy of only 13 months, and Charlie passed away on 25th February 2020 aged just 17 months.
“Charlie went into critical care at Alderhey Children’s Hospital in July 2019 and stayed there until we left for end of life care at Claire House Children’s Hospice in February 2020. Claire House enabled us to enjoy positive experiences and make long lasting memories with Charlie, including a beach party, a trip to blue planet and Charlie’s first ever swim whilst listening to the soundtrack from his favourite film, The Snowman.”
He was speaking at the start of a bid to raise cash for Claire House to help others by climbing Ben Nevis, Scafell and Snowdon and building a snowman on the summit of each mountain.
As a member of the local Mountain Rescue Team, he said he was used to operating in mountain environments, and that was how he came up with the idea.
He added: “My partner and I worried Charlie would be forgotten about and there would be nothing to remember him by. As I walk up a lot of mountains this seemed like a fitting tribute.
“I came up with the idea to build a snowman as we had the Snowman video on all the time we stayed in Paediatric Intensive Care for many months. We also played ‘The dance of The Snowman’ when Charlie had his swim in the Claire House Hydrotherapy pool, this was on our Bucket list of experiences we wanted for him. Charlie gently passed away to ‘The Snowman’ at Claire House and we also played it at his funeral. It makes me feel connected to him.”
He added: “Charlie had a short life but I’d like to leave a legacy to help other kids. The memories we have wouldn’t have been possible without Claire House, so I decided to fundraise for them.”
Andy’s JustGiving page can be found here: https://justgiving.com/fundraising/andrew-rooke2.
