A 15-year-old girl has been described as "the happiest person in the world" despite living with a debilitating condition.
Jess Ruston was diagnosed with Beckwith-Wiedemann syndrome, an overgrowth disorder that sees parts of her body grow abnormally.
Jess, from Southport, was diagnosed at eight months after struggling with feeding issues and developmental delay.
She is non verbal, breaths through a tube in her neck (tracheotomy) and has had her spine fused due to curvature and developmental delay. She struggles with pain a lot due to the severity of her gut dysmotility.
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Jess's mum Alison Ruston, 42, told the ECHO: "Jess has a unique chromosome abnormality alongside Beckwith-Wiedemann syndrome. Because she has a unique chromosome abnormality, it makes everything unique.
"We really have never known what the future will hold for Jess. Recently she has had to have two major surgeries on her gut. In the last two months she's had her gallbladder removed and her colon removed.
"As Jess has gotten older her condition has deteriorated so that basically means that we treat the symptoms as they come. There's nothing we can do proactively to try and heal Jessica.
"Her gut has failed now so she is fed into her veins by IV with something called total parenteral nutrition. She has a stoma beg, she's got her peg in her stomach so we can give her medication and then we can also drain things out of her stomach.
"On paper she's a very poorly little girl but she's the happiest person in the world."
The unique 15-year-old has spent a lot of time at Claire House Hospice in Wirral, with her older sister Olivia now looking to raise money for the hospice and Children in Need.
Jess's 17-year-old sister will be taking part in the Great Rickshaw Relay Challenge with The One Show host Matt Baker.
She will be cycling from Churchtown Primary School to Claire House Hospice.
Alison, mum to Jess, Olivia and son Joseph, 12, told the ECHO: "She's going to be involved in team Rickshaw with the BBC so she is going to be cycling the Rickshaw [Challenge] with Matt Baker from Churchtown Primary to Claire House Hospice on the Wirral.
"Children in Need fully fund Claire House sibling support and Olivia's sibling attends Claire House so Liv and her little brother both use sibling support so she would like to highlight what young carers do. The support is vital."
Olivia will be starting at Churchtown Primary on Wednesday November 3 and making her way to Marine Way Bridge for 10am. People are urged to come along to cheer.
From there, Olivia and Matt will be heading to Liverpool where they will get the ferry to the Wirral and finishing their journey at Claire House.
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