A dad who made a promise to keep his son's legacy alive following his death from a rare condition.
Andy and Sarah Rooke's son Charlie stopped breathing when he was just eight months old leading to a diagnosis of Spinal Muscular Atrophy Respiratory Depression (SMARD) in November 2019. Dad Andy, from Prenton, said they had "suspicions" something was wrong after Charlie was born following a traumatic birth.
But it was only later he was diagnosed with the rare genetic disease that causes muscle weakness and respiratory failure typically beginning in infancy. Charlie was eventually sent to Alder Hey Children's Hospital, where he stayed for around nine months in high dependency and intensive care units.
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Charlie died on February 25, 2020 at the age of 17 months. His dad then made a promise that he wanted to do everything he could to keep his son's legacy alive.
In November 2019, the parents were told Charlie's condition was terminal, and at the same time, Sarah was pregnant with his younger brother, Thomas. However, the family were dealt more heartbreak after a test was performed and Sarah's waters ruptured, meaning Thomas was sadly stillborn in the same month.
But as Claire's House hospice went "above and beyond" for the family, Andy decided to give something back and set out on an incredible challenge. In a take on the Three Peaks challenge, the trained mountain rescuer travelled 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 foot tall.
But to mark what would have been Charlie's fourth birthday on September 19, Andy decided to go further and complete another gruelling fundraiser, in a bid 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.
"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."
Setting off to walk up Snowdon twice, accompanied by friends, on September 15, the dad then set off to complete the other two peaks solo. Thanks to his incredible efforts, he has raised over £22,000 for Claire's House, which helped them through their darkest times.
Andy added: "We benefitted from it all, we went through stages with Claire's House and accessed a whole range of services even before we got the diagnosis that he was fatal and was going to die. They helped us make memories and that made a huge difference, I know the money raised will do a lot of good.
"Not only did we benefit from end of life care, but also after death as well as bereavement services and siblings supported and that support continues even now. Children's hospices are not just somewhere children go to die, they go there to live.
"Unfortunately, with us we had to have end of life care but they supported us both with Thomas and Charlie. But children go there to live, they experience life and help make positive memories for children and parents."
Claire House Children’s Hospice helps seriously and terminally ill children make the most of the time they have however long or short that may be. Speaking about his gruelling fundraising over the last two years, Andy said it was all for an incredible cause.
He added: "This one was quite tiring because I had no break between anything and I got down from a mountain, had a bite to eat and was driving to the next mountain. It was a continuous cycle of climb, drive and sleep and not much in between.
"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 the 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."
Although Andy's fundraising page has been closed, donations can be made directly to Claire's House by clicking here.
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