Mum and dad thought something was wrong after a traumatic birth. A father made a promise to keep his son’s legacy alive following his son’s death from a rare condition.

Charlie Rooke, the son of Andy and Sarah Rooke, stopped breathing when he was only eight months old, prompting a diagnosis of Spinal Muscular Atrophy Respiratory Depression (SMARD) in November 2019. Andy, Charlie’s father from Prenton, said they had “suspicions” something was wrong after Charlie was born after a traumatic birth.

But it wasn’t until later that he was diagnosed with a rare genetic disease that causes muscle weakness and respiratory failure in children. Charlie was eventually moved to Alder Hey Children’s Hospital, where he remained in high dependency and intensive care units for nearly nine months.

Charlie died at the age of 17 months on February 25, 2020. His father then promised to do everything in he could to keep his son’s legacy.

(Image: Andy Rooke)

Charlie’s parents were told in November 2019 that his condition was terminal, and Sarah was pregnant with his younger brother, Thomas, at the same time. However, the family was dealt even more heartbreak when a test was performed and Sarah’s waters ruptured, resulting in Thomas’s stillbirth in the same month.

But, after Claire’s House hospice went “above and beyond” for the family, Andy decided to give back and embarked on an incredible journey. In order to complete the Three Peaks challenge, the trained mountain rescuer traveled to Ben Nevis, Scafell Pike, and Snowdon back in February and set out to build a snowman character that each turned out to be around six or seven feet tall.

But, to mark what would have been Charlie’s fourth birthday on September 19, Andy decided to go and complete another grueling fundraiser in order to keep his son’s memory alive, create a legacy in his name, and raise vital funds for the hospice.

He told the ECHO: “We didn’t have much connection with the outside world back then and not everyone got to know Charlie, some family members saw him twice and never again. People didn’t know his story and we didn’t want his memory to be faded.

“We wanted his condition and his story to be told and by doing so it would keep his memory alive. The fundraising started off because Sarah said she didn’t want the baby to be forgotten and I promised I wouldn’t let that happen I would make sure everyone gets to know his story and what it’s been about so I started the fundraiser.

(Image: Andy Rooke)

“Then, of course, we bounced straight into the pandemic but we kept the page open and in those two and a half years it’s kept me going. I knew I’d potentially do something else and because my birthday was on September 15 and Charlie’s would’ve been on the 19th, I decided to do the three peaks, self-supported, and close it on his birthday.”

“It was a struggle. Logistically it was difficult as well, thinking about the half-hour ahead and making sure I had enough fluids, and making sure blood sugars wouldn’t drop.

“I did Snowdon twice with friends for the sunrise which was nice to have a bit of company but when I did Ben Nevis on Monday that was when it really started to get tiring. A couple of times UI thought what was I doing but knowing it was for a good cause and finishing on Charlie’s birthday spurred me on.”



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