Video: A man’s campaign to get better treatment for his granddaughter’s rare condition

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This heartwarming video showcases a desperate man’s campaign to get his cute granddaughter better treatment for her ultra-rare medical condition.

Will Newman, 66, created a YouTube video of sixteen month-old Ellie to highlight her rare 200,000/1 disease - cystinosis. The one-minute video shows tiny Ellie opening and closing a door with a number 10 painted on it with the text: ‘I’m far too cute for my life to go down the chute.’ Will made the video with the hope of bringing his family’s plight of rigirous hospital visits to the attention of PM Teresa May - who spoke on Question Time about new medicines.

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