A west London couple are experiencing "prolonged grief" after their nearly four-year-old daughter was diagnosed with a rare, degenerative genetic disorder that will lead to blindness, paralysis, and a life expectancy of just 10 to 12 years without treatment.
Emma Vukic and Max Bridge, both 38 from Acton, said their only child, Rosie, who is “super lovable and affectionate”, developed normally until the age of two, when she started to exhibit problems with her speech.
