The Wilmslow family of a girl with a rare debilitating condition have written to NHS England about a legal challenge against the decision not to provide her with a drug which would "transform" her life.
Fifi Basma, who turns 10 today, has the genetic disorder Spinal Muscular Atrophy (SMA) which means she has a range of issues including muscle weakness and mobility problems.
In May last year the National Institute for Health and Care Excellence (NICE) and NHS England agreed that the drug Spinraza would be made available on the NHS. It was first thought that the drug would be available for all children in Fifi's situation.
However, in July 2019, specific criteria for accessing the treatment were published. This meant that patients like Fifi had to demonstrate their ability to walk at least five steps in a specific time period.
Unfortunately, doctors were unable to recommend she be given the drug based on a one-off assessment in which Fifi, who attends Lacey Green Primary Academy, was documented as only walking four steps unaided.
The family appealed the decision to NHS England which was rejected.
Fifi's mother, Sara Basma, has now instructed public law and human rights lawyers at Irwin Mitchell to investigate.
Their legal team has written to NHS England calling for Fifi to be given access to Spinraza or potentially face a judicial review in the High Court.
Katy Moulton, public law and human rights lawyer at Irwin Mitchell, representing the family, said: "Fifi and her family are understandably devastated by the decision not to allow her access to Spinraza, especially as they had first thought that the treatment would be made available to everyone with Fifi's condition.
"Sara believes it would be unfair to base the decision on one assessment where Fifi was documented as walking four steps, as the importance and reason for that assessment was not clear at the time.
"Fifi and her family did not know that several months down the line it would be used to make a decision which would have such huge repercussions on Fifi's life. The other supporting evidence provided by the family has not been accepted.
"The issue of access to this drug is potentially one that does not just affect Fifi but also many others with Spinal Muscular Atrophy.
"For the ability to walk one step to be a barrier preventing a young girl from accessing treatment leading to a more independent life, particularly when other supportive evidence has been provided to show that she could walk unaided, is extremely concerning.
"We have now written to NHS England calling for this decision to be reversed."
Fifi was diagnosed with type three SMA around the time of her third birthday.
Fifi's mother, Sara, said that her daughter used to be able to walk completely independently but sadly Fifi's condition has deteriorated and she is no longer able to walk. Despite this, Fifi lives a happy and active life. Before lockdown she would attend physiotherapy sessions, yoga, and go horse riding and swimming to improve her strength and mobility.
Sara said: "How can one assessment and the reliance upon it be the sole evidence needed to make a decision of this magnitude?
"Fifi is a wonderful girl. She shows such courage and bravery each day. If the importance of that assessment had been made clear to Fifi I firmly believe she could have managed one more step. I don't think that's unreasonable to expect. That one assessment isn't a true reflection of Fifi's condition.
"We believe Fifi did have the ability to walk unaided during the relevant period. Now with each day that passes her condition gets worse and she can no longer walk. She has enough strength to pull herself up using furniture but without access to this treatment we fear she will start losing her upper body strength too.
"Fifi is fully aware of what this decision means to her and she is scared about the future.
"It seems totally unfair to deny a 10-year-old access to treatment that would transform her life."