An 11-year-old girl living with ultra-rare Rett syndrome has managed to speak to her mother for the first time in several years, following ground-breaking medical treatment.
Romi Löffler, Glasgow, needs 24-hour care, as the condition affects not only her speech, but also limits her body movements, alters her breathing and causes regular seizures.
Gael Gordon, Romi’s mother, said: “About a year ago Romi’s seizures were so bad, we were in an ambulance several times a week”.
But more recently, pioneering treatment using the drug ketamine has enabled young Romi to speak the word “mummy” to Gael for the first time since she was three-years old.
Gael explains: “Romi’s neurologist read about a low-dose ketamine treatment which actually made an incredible difference for Romi – she has been more well and alert, has improved hand movement and is now doing arithmetic, reading and multiplication.
“The last time she had ketamine she said ‘mummy’ and that’s incredible for any mother. She hadn’t said it since she was three.”
However, Gael, 46, insists that Romi is far from cured of her ultra-rare condition.
“Romi has spent far too much time in hospital. Her life is a struggle but she’s the sunniest-natured child I know.
“Just to hear Romi talk again would be incredible,” she says.
Rett Syndrome is thought to affect one in every 15,000 young girls in the UK – and even less young boys.
At EnViva Paediatric Care, our experienced staff can provide complex nurse-managed homecare for babies, children and young people with a range of disabling conditions, including Rett syndrome. For more information about the services we provide, please contact us today.