Daisy is 10 years old and lives in West Yorkshire with her mum, Jenny, and her 11 year old brother, Tom.

She has a rare genetic mutation called SCN2A, which Jenny explains is “Different in every child, but for Daisy it’s caused complex epilepsy and Global Development Delay (GDD) so she struggles to pick up certain skills. I think smiling only came when she was about three years old.”

Jenny explains that Daisy “Doesn’t talk or communicate very well. She can’t stand, she can’t sit, and she has very low muscle tone so she’s very floppy. Daisy can’t hold her head up on her own. She has scoliosis because of the way her muscles are so loose, and she has to wear a body brace to keep her upright.”

Daisy relies on Jenny as her full time carer. She explains that it can be exhausting “When someone is totally reliant on you for their every need from the moment they wake up.”

As Daisy accesses much of her support through school, which has been closed, Jenny explains that “Daisy’s not been able to access any physio, or any therapies that she would usually receive in school.

Jenny adds that “When you’re on a limited budget, the big things are the things that knock you into debt or leave you begging for help. Family fund are a helping hand when times are tough.”

“We’ve had a tablet that we used in lockdown for Daisy to access songs that she knows from school. We’ve just got some new kit from school so that we can mount it and use it easier, especially if she goes into Zoom calls with school.”

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