Court rules in dispute over treatment for child with very rare genetic condition

Court rules in dispute over treatment for child with very rare genetic condition


CategoryNews Author Victoria Butler-Cole KC, Ian Brownhill Date

The court has given judgment in respect of child, J.

The Birmingham Women’s and Children’s NHS Foundation Trust applied, pursuant to the inherent jurisdiction, to the High Court, to grant declaratory relief. The declaration sought was in respect of a 6-year-old girl (J) who is suffering from a very rare terminal neuro-degenerative genetic condition, known as NRROS-gene deletion (negative regulator of reactive oxygen species). J is one of a handful of children in the world with the condition.

The NRROS-gene encodes proteins which are essential for brain development and function. The abnormality of that gene causes neurodegeneration, including febrile seizures, infantile spasms and focal and myoclonic seizures. The Trust sought a declaration that it is in J’s best interests for her not to be given mechanical or invasive ventilatory support and for what are referred to as, “ceilings of treatment” to be put in place.

The court heard oral evidence and argument over 3 days and granted the Trust’s application.

Victoria Butler-Cole QC appeared for J by her children’s guardian, instructed by CAFCASS legal.

Ian Brownhill appeared for J’s parents, instructed by Irwin Mitchell LLP.

Further coverage can be found in the Independent


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