A seven-year-old girl died after suffering from a rare condition which meant she couldn't speak to her family.
Two weeks after Ellissa Dodd was born, she was diagnosed with rare neuro-developmental disorder FoxG1. The condition is caused by a mutation of the FOXG1 gene, which impacts brain development and function.
As a result, she needed 24-hour care and she couldn't talk.
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Ellissa's dad Jack, from Warrington, told the M.E.N: "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."
"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 her.
"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."
After her health deteriorated, Ellissa spent her final days at Derian House Children's Hospice in Chorley. She died on October 17 last year.
Jack said: "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."
Ellissa, her dad, mum Liz, and siblings Sophia, 10, and Charlie, four, were given support by the hospice throughout.
Jack added: "When Ellissa passed away she spent time in one of the hospice's cold rooms. 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.
He will be joined by friends Richard Sharpe, James Limbert, Chris Riddell, Andrew Livesy, Lewis Moss, and Rob Walsh and the target is to raise £3,000.
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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