A granddad is determined to keep his grandson's memory alive after his sudden death.
Noah Storey was born with a genetic condition called Myotubular Myopathy, meaning he was unable to move his body properly and could not communicate verbally. "Adored" by his family, Noah was eventually allowed to leave hospital and be cared for at home by parents James and Kate.
But the young boy's life-limiting condition "worsened" and the rare condition started to take over his life. In March of 2021, Noah died surrounded by his family at the young age of nine months.
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Myotubular Myopathy is a genetic condition that causes general muscle weakness. According to the Myotubular Trust, many people require constant care and do not survive their first year of life.
Grandad Kevin Storey, from Huyton, has paid tribute to his first grandson. Kevin told the ECHO: "Noah was our only grandson and we didn't know about the condition until he was born.
"We didn't know how life-limiting it was. He was a lockdown baby and spent most of his life around just his immediate family but James and Kate were dealing with it all admirably. He was an adored little boy."
He added: "The only thing Noah displayed was weakness, the condition manifests in certain parts of the body and he had no movement in his torso. He couldn't speak but was able to communicate with his hands and recognise nursery rhymes and toys. He had to be fed through a tube."
Having already booked to climb Everest with colleagues Lucy Keher and Andrew Lomas, the group decided to raise funds in Noah's memory for the Myotubular Trust in the hopes no one goes through the "immense suffering" they have. They also decided to raise funds for local charity Ruben's Roar, which provides cuddle cots and cooling blankets to grieving families in Merseyside.
Kevin said his family knows first hand the benefit these items can bring, even for a short time. Through their 16-day trek, the group, at Active Flooring Solutions, raised over £6,000.
Kevin added: "We returned to work after the January 2021 lockdown and we realised a few of us had big birthdays, I was turning 60, Andrew 50 and Lucy 40 and as a challenge we decided to do Everest base camp so we were preparing for that. But in the meantime Noah worsened, we didn't know how long he'd have left or if he'd have any quality of life and it consumed our very lives.
"He passed in March 2021, but by then we'd committed to this trip so we as colleagues thought we would raise awareness and money for charities and it was no easy feat. We raised a significant amount of money.
"When Noah died we were able to bring him home with us within hours thanks to a cooling blanket, which isn't available frequently but it meant we could have him at home and grieve as a family regardless of restrictions. So to do this challenge for charity, we wanted to benefit others."
Ruben's Roar is a bereavement charity in memory of a young boy who also had Myotubular Myopathy. Helping families during their grieving process through remembrance items, Kevin said these allow families to "have a moment in time that lasts forever."
Kevin added: "As a parent, if you're getting this item donated, it helps you massively with your grief. These are small charities and that became our drive during Everest. Even though it was two years from Noah's passing, we had all this money in his memory and were helping people to recognise this condition."
The group returned on November 5, 2022 after their incredible 16-days there as Kevin said it was an honour to do something in memory of his grandson. He said: "It gave me a great sense of pride to do this as a grandfather.
"If we didn't have those things like the cooling blanket, we would've been like any other family, told over the phone their grandchild had passed but we were able to spend time with him. Now, we can keep his memory alive and James and Kate are expecting their second child, a little boy, who has gone through the genetic testing.
"But Alder Hey have been fantastic, they had the most caring and attentive support, James and Kate were in hospital every day and nothing was too much trouble."
To donate to Kevin's fundraiser, click here.
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