When six-year-old Partaap began struggling to stand, climb the stairs and do other everyday activities, his parents knew something was wrong.
Over the following months, his family faced a series of hospital appointments and tests as they searched for answers.
The diagnosis, when it came, was devastating.
Doctors told them Partaap had an extremely rare variant of Juvenile ALS, a type of motor neurone disease (MND), according to the NHS, external.
They said only 40 to 50 children worldwide had been diagnosed with the condition and that he is believed to be the youngest person in the UK living with it.
“As parents, hearing this felt like the ground disappeared beneath us,” said his mother, Gurbinder.
The first signs of the condition appeared early last year, when Partaap began falling over for no obvious reason and found it increasingly difficult to walk long distances.
In January, genetic test results confirmed the family’s fears.