Ellissa Dodd was a 'little ray of sunshine'. She couldn't talk, but her love for her family - and life - was clear.
She died aged just seven. The impact of the little girl known as 'Boo Boo' on all she met, her dad says, was huge.
"She was such an amazing person," Jack, 35, said. "She was so full of life, even with everything she had to go through."
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Ellissa was born in August, 2015. At only two weeks old, doctors discovered she had a rare condition - FoxG1.
The neuro-developmental disorder is caused by a mutation of the FOXG1 gene, which impacts brain development and function. Though Ellissa needed 24-hour care, she didn't let it hold her back.
"Even though she couldn't talk, she communicated in her own way and made such a huge impact on everyone she knew and taught us all so much in life," Jack, from Warrington, said.
"It was difficult for us all. We had many medical appointments over the years and she needed oxygen and feeding tubes. My wife became a full-time carer for he.
"She didn't let it stop her. Ellissa went to school and her teachers loved her. We also managed to go to Disneyland in 2022 before she became unwell."
Tragically, on October 17 last year, having spent her final days at Derian House Children's Hospice in Chorley, Ellissa died.
Jack added: "We made many happy memories with Ellissa at the hospice - splashing in the hydrotherapy pool, playing in the gardens and watching films in the cinema.
"It meant we could do normal things as a family, but be more in control of what was going on in a safe environment. They gave us so much support during Ellissa's life."
Derian House provided Ellissa, her dad, mum Liz, and siblings Sophia, 10, and Charlie, four, with vital support.
"When Ellissa passed away she spent time in one of the hospice's cold rooms," Jack added. "It meant that we could still visit her and spend a final few moments with her. That was incredibly important to us as a family.
"The hospice has always been there for us when we needed it, and even now we're still helped by them with counselling sessions and support."
Jack is running from Yorkshire to Chorley to raise money for the hospice. He will run 62 miles - from Harrogate to Derian House - in just one day on Saturday, May 27, joined by friends Richard Sharpe, James Limbert, Chris Riddell, Andrew Livesy, Lewis Moss, and Rob Walsh.
His target is £3,000. He added: "We've been training since November - it's all going to be worth it."
Kerry Pritchard, community fundraiser at Derian House, said: "Jack is so brave to take on such an enormous challenge that will not only raise vital funds to care for families like his – but will also raise awareness of what we do and the impact it has.
"While care is free for families, it will cost £6 million to run services at Derian House in 2023. We rely on the generosity of our kind-hearted supporters – like Jack – for 70p in every £1.
To sponsor Jack, visit his JustGiving page here.
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