“I don’t know what’s wrong with my daughter. Why she swells up, why pus comes out of her eyes and nose… We have been going to doctors for 2 years, had many tests and surgeries, but nothing helps I look at her and my heart breaks… she’s so cheerful, restless… she walks, chatters, laughs, but in a matter of seconds her face can swell up, she writhes in pain and cries.”