Until relatively recently, children and young people with life-shortening conditions were not expected to survive into adulthood.

Conditions such as cancer, cystic fibrosis and Duchenne muscular dystrophy were widely understood, particularly in the late 20th century and early 2000s, as diagnoses that would likely result in death during childhood or adolescence. Today, there are more than 400 recognised life-shortening conditions, and many infants and children with these diagnoses still do not reach adulthood.

However, advances in medical treatment, specialist care and assistive technologies have begun to change this picture. Increasing numbers of children and young people with life-shortening conditions are now living into adulthood, sometimes well beyond what clinicians and families were originally told to expect.

Although most young adults with these conditions still face shorter lives, increased life expectancy has made new aspects of social and family life possible. This includes the opportunity to think about sexual relationships, intimacy and reproduction.

For the past 15 years, I have worked with colleagues in the Sexuality Alliance, which advocates for the sexual and reproductive rights of disabled young people living with........

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