Video report by Amy Welch
The family of a toddler from Manchester who were told he may only survive a matter of months have been given fresh hope that a new drug may give him a better quality of life.
Haris Khan has spinal muscular atrophy- a rare muscular condition, we followed his family's fight for a drug called Spinraza which was made available on the NHS in 2019.
The health watchdog NICE has been considering whether a new drug called Zolgensma, which may enable Harris to stand and walk, should be recommended for use on the NHS.
However the drug is very expensive, and that cost will be taken into consideration when a decision is made by health officials next month.
Haris' father Shakeel said that Spinraza had made a difference to Haris' movement and that they were seeing improvements but that Zolgensma would really enhance his quality of life.
He added: "It would mean everything to me and my family if we could see Haris walk, stand up and kick a ball with his brother."
You can follow Haris' journey and the progress he is making on his Instagram page.