Olivia Jarman, 12, from Bristol, has found the best therapy for her rare condition 10 minutes from home, after her parents spent years searching for appropriate therapy. Olivia has Kernicterus (a form of brain damage usually the result of jaundice at birth) causing Dystonia (a neurological movement disorder that manifests itself in painful, twisted and uncontrollable muscle spasms). After many years gaining accurate diagnoses and enduring some very painful medical complications along the way, the family was relieved to find Neurokinex, a specialist neurological rehabilitation centre in Almondsbury, is the most effective in mitigating and easing Olivia’s symptoms.
“Olivia was born prematurely at 23 weeks and 6 days and was in hospital for five months,” says her mother Samantha. “She had a number of issues associated being born prematurely including jaundice and was presumed deaf when she failed her newborn hearing screening. Once we got Olivia home, we soon realised she wasn’t hitting her movement milestones such as rolling, sitting and shuffling. We were told she probably had Cerebral Palsy and some of her symptoms indicated that,” says Samantha. “However, she had other symptoms including involuntary muscle movements which indicated she has dystonia of some kind and was also diagnosed with auditory neuropathy.”
At the age of four Olivia was diagnosed with the rare condition of kernicterus based on her combined symptoms of dystonia, auditory neuropathy, staining on the enamel of her teeth and an issue with her upwards gaze that indicated damage to her optical nerves.
“While it was good to finally have a diagnosis, our hopes were short-lived when we were advised by several people that there was little they could do and, in effect, we should stop looking for solutions to these incurable condition,” says Samantha. She and her husband Lee instructed a solicitor to help them establish if Olivia’s conditions were caused by difficulties at her birth. The hospital maintained her diagnosis was Cerebral Palsy and it took the Jarman family eight years to prove the true complexity of her condition.
Olivia’s journey has been tough: in 2014, aged eight, she had a severe reaction probably due to medication for increased dystonia, resulting in another very rare disorder, Stevens-Johnson syndrome which attacks the skin inside and out. Olivia was treated by the burns team and lost 80% of her skin. She pulled through from this potentially-fatal disease but was very ill and took two years to recover.
“Olivia has had some terrible health scares and we have certainly had difficult patches in the family, especially when her younger brother Alex, now eight, was very small as he developed a fear of being left as Lee and I often had to spend long spells away from home with Olivia while he stayed with his grandparents,” she explains. “The only saving grace in all this is that we run our own company so were able to work around this more easily than if we were employed by others.”
Sam and Lee travelled the length and breadth of the county looking for therapists who could help Olivia manage her various symptoms. However, nothing seemed to work for long and the hospital and clinical environments in which she found herself added to her stress.
“Anxiety and stress can both trigger worse symptoms in Olivia’s muscles, making them tighter and more painful,” says Samantha. “At times, simply thinking about going for her therapy session made her worse: it was very upsetting.”
Last year, Samantha read about Neurokinex and called its clinical lead Edward Baker to see if he could help. “From the moment we spoke I knew Edward was willing to help and work with Olivia’s symptoms. He listened carefully, made no assumptions and from day one tailored the therapy to what Olivia could do and what suited her. Where before consultants had tried to categorise her, Edward took a completely individual approach, had no pre-conceived ideas and went with his instinct. It was a huge relief.”
“Neurokinex specialises in helping people with spinal cord injuries to improve their function and independence,” says Edward Baker, Centre Manager at Neurokinex Bristol. “We had never encountered someone with Olivia’s condition before as it is so rare but many of the symptoms and challenges are like those found in spinal injury – tight muscles and difficulty moving parts of your body. We apply simple principles from physical rehabilitation and work on Olivia’s strength and balance. It’s important to recognise you can’t know the answer to every individual condition, take it one day at a time and work on improving simple tasks bit by bit.”
“The impact of Neurokinex has been immense: Olivia has stronger muscles, she sits straighter, holds herself better and is able to largely control her previously involuntary movements,” says Samantha. “She also has more control over her fine motor skills which are amazing to the point she can now write very well without assistance. Added to this, Olivia loves her sessions, Edward lets her play her favourite music while she works, they laugh together and she is calm and content there.”
Prior to finding Neurokinex Olivia had botox injections every six months to relax her limbs that become very dystonic and tight. Usually, by the time six months had elapsed, she would be desperate for her next treatment. But Olivia has now gone for nine months without botox and feeling better than before.
“Neurokinex threw us a lifeline and we are so thankful we found it,” says Samantha. “We are all welcome there, including Alex who comes along to some of the sessions. We don’t know what the future holds for Olivia. She is currently home schooled and loves English, science, animals, theatre and cinema,” she says. “I’d love for her to go back to school and once her dystsonia is under control perhaps that could happen. She certainly wants to go to college and if anyone can help manage her symptoms so she can attend, Neurokinex can.”