Chichester girl with cerebral palsy continues to ‘defy the odds’ after premature birth

Ella Jarvis-Brand, who lives with cerebral palsy, weighed just 650g when she was born at 24 weeks and her parents, Rachel and Emma, were faced with another challenge when lockdown stopped her weekly rehabilitation sessions at the specialist neuro rehab centre Neurokinex Kids near Gatwick.

Ella, who first started at the centre in January 2019, needs specialist rehab to build and maintain her core and upper body strength and stepping therapy to encourage her to walk more and use her wheelchair less.

Rachel said: “We were delighted with how well Ella was doing during her Neurokinex Kids sessions and the improvement in her physical strength, walking ability and confidence and independence were wonderful to see.

“When lockdown hit, we, like everyone else, were a bit lost for a while but we soon realised that our priority was to maintain the improvements to Ella’s walking so we bought a small treadmill for her to use at home.”

A ‘quick learner’ and ‘always eager to please’, Ella progressed quickly from walking on a treadmill fully supported by a harness to walking independently for up to 10 minutes just holding onto the handles.

She was also working with the Neurokinex team to build up her core strength and enable her to hold her bodyweight when transferring to and from her wheelchair and going from sitting to standing.

Rachel and Emma also saw a big boost to Ella’s confidence as she started to gain more independence in terms of fetching and

carrying things, feeding herself and playing with her little sister Poppy, three.

They set the treadmill up in the family wet room where they have a hoist already in place to help Ella and a number of mirrors.

Emma said: “Ella loves seeing herself and at Neurokinex they bring all the mirrors across to motivate her.

“Our wet room was the obvious option and Ella soon got into the habit of using the treadmill for 25 minutes each day.”

While this helped during lockdown, Emma and Rachel couldn’t wait to get Ella back to Neurokinex.

“Her trainer Rocky [Addison] kept in touch throughout lockdown and was on hand with advice but as soon as we heard it was opening back up, we were literally first across the threshold,” Rachel explained.

While Rachel and Emma had encouraged Ella to keep physically active with the treadmill, Ella has benefitted from her return to precisely targeted therapies – to balance her asymmetrical frame, train her left foot to align better and to keep developing her fine motor skills.

Ella has started back with three sessions a week and this ‘expert guidance and training’ has brought ‘great results’.

Rachel continued: “Ella loves people but being non-verbal, sometimes it can be hard for her to communicate and socialise.

“However, Rocky took time to really understand Ella’s quirks and needs and they are firm friends.

“They sign to each other all the time – even when Ella should be holding onto things which can challenge her balance.”

In and out of hospital for the first four years of her life to manage the impact of a brain bleed shortly after birth, her cerebral palsy, a chronic lung condition and recurring chest infections, Ella has built resilience and learned to ‘come back’ from interruptions to her physiotherapy and rehab.

Lockdown, however, was the longest period away from therapy.

Emma said: “Ella is such a plucky soul and we just want to do all we can to help her.

“When she was very young, we were told she would never do anything for herself – not eat, drink, sit, stand or walk.

“She has literally surpassed all medical expectations and now happily sits independently, feeds herself with a spoon and

drinks with a special cup.”

Ella is now preparing to return to Fordwater Special School in Chichester next week, where Rachel and Emma both work as teachers.

Rachel said: “Our goal is for Ella to be as independent and happy as possible, whatever that means for her.

“If Ella’s happy, we’re happy and we can’t thank Neurokinex Kids enough for helping Ella fulfil her potential.”

Trainer Rocky said Ella is a ‘lovely girl’ and ‘it’s great to see her progress’.

He added: “Ella is fantastic and works really hard in her one-hour sessions.

“We typically start with 10-15 mins on the treadmill before moving on to stepping, crawling, frame walking and rolling.

“We encourage Ella to use her functional and spatial awareness skills – picking things up to carry or move them, pressing buttons to call the lift or open doors. It’s all about maximising independence for her.

“Ella is pretty resilient and has shown really good strength improvements from increasing her session frequency since lockdown.”

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