text: “We spent a few hours singing to him, cuddling him and talking to him before they took the ventilator off.
  “Frankie asked why his tongue was protruding from his mouth and said in the car on the way home ‘Mummy, is Arlo going to die?’.
  Arlo’s funeral is being held tomorrow afternoon and will be “very Arlo”. His parents have organised a garbage truck to be there, everyone is getting M&Ms and Mexican food will also be eating afterwards as these are the things Arlo loved. In lieu of receiving flowers, Mrs Upton is asking for donations to be made to Ronald McDonald House.
  “Arlo was beautiful. He looked like a cherub. He had blonde curly hair, big blue eyes, pouty lips and the longest eyelashes. He was just a real character.
  “For a child to arrive with all these qualities and not know this will be his path. It’s just an incredible waste and for his life to be stolen from him. I’m just so sorry this has happened to him.”