‘Brave’ girl who struggles to walk may get life changing drug

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A 10-year-old girl denied a potentially 'life-changing' drug because she took one step too few has won a court battle that could pave the way to a U-turn.

Fifi Basma was diagnosed with a genetic disorder called spinal muscular atrophy (SMA) when she was just three years old.

The condition makes muscles weaker and causes problems with movement, leaving Fifi with mobility difficulties.

But she was blocked from being prescribed Spinraza because, when assessed, she took four instead of the required five steps to have the drug sanctioned.

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Fifi's family, from Wilmslow, appealed, but it was rejected.

So, her mum Sara launched a judicial review which initially led to a High Court last October upholding the decision to not provide the drug.

Fifi Basma is desperate for a life-changing drug that could help her to maintain movement in her body

But a recent hearing at the Court of Appeal has now overturned that judgement and ordered the hospitals – Manchester University Hospital NHS Foundation Trust and Great Ormond Street Hospital NHS Foundation Trust – to reconsider the evidence.

Katy Clarke, the public law and human rights expert at Irwin Mitchell, representing Fifi and her family, said: “Today’s judgement is a huge step forward for Fifi and her family.

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"After being refused access to Spinraza, they were devastated as they strongly believe that Fifi’s quality of life could be greatly improved by this treatment.

“The family had provided other evidence of Fifi’s ability to walk five steps so they found it unfair that the decision to grant access to the drug appeared to have been based entirely on a one-off assessment where Fifi only walked four steps, especially as it is acknowledged that patients with SMA do have “off” days.

Specialist lawyers at Irwin Mitchell are acting for Fifi Basma

“Whist they would have preferred not to have been in this position, the family felt they were left with no other option than to bring a legal challenge.

"The fact that the decision will now be reconsidered, taking into account all the evidence they have provided, is a massive boost to them and gives them hope that a decision will now be made that Fifi can finally access this treatment.

“This case is one example of the benefit of judicial review for people such as Fifi and her family whose lives have been impacted by decisions made by public bodies.

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“It also highlights the importance of individuals being able to access legal aid to obtain advice about their rights and to enable them to bring judicial review proceedings if necessary to challenge decisions made."

Fifi was diagnosed with SMA aged three and can no longer walk unaided as her condition deteriorates.

Mum Sara said: “We are so happy with today’s judgement and very grateful that the court ha ruled the decision not to grant Fifi access to Spinraza must be reconsidered.

“Fifi is such a brave girl and we are all so proud of how she gets on with life and stays so positive despite her deteriorating condition.

“At the very least, this treatment could potentially help Fifi with the mobility and strength in her upper body, and at the best she may even be able to walk again.

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"It would make such a difference to her life.

“When she was rejected for treatment, we were heartbroken but had to keep fighting for her.

"We knew she could walk five steps and so should be able to access this treatment.

"Now the court has heard our plea we can’t thank them enough for allowing the appeal.

“We really hope that in light of the court’s judgement the doctors will now do the right thing and provide Fifi with the treatment she so deserves and stop her from deteriorating any further.”

Spinraza is a drug used to treat SMA in adults, children and infants by helping the body produce a protein which is lacking in people with the disorder.

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Her mum Sara said Fifi previously could walk completely independently, but her condition has deteriorated and she is no longer able to.

Before lockdown she would attend physiotherapy sessions, yoga, and go horse riding and swimming to improve her strength and mobility.