Seven-year old Ella Jarvis-Brand from Chichester is one feisty young lady.  She has defied the odds since the day she was born at 24 weeks weighing just 650g so when lockdown stopped her weekly rehabilitation sessions, you just knew that she and her parents, Rachel and Emma, would find a way through.

Ella has cerebral palsy and 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.

Ella started at Neurokinex Kids in January 2019.  A lucky recipient of a special bursary made available thanks to a donation from the Peter Harrison Foundation Community Fund, Ella made rapid progress with the Neurokinex team.  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. 

Boost in core strength and confidence

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, 3.

“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,” says Rachel.  “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.”

They set this up in the family wet room where they have a hoist already in place to help Ella and lots of mirrors!  “Ella loves seeing herself and at Neurokinex they bring all the mirrors across to motivate her,” says Emma.  “Our wet room was the obvious option and Ella soon got into the habit of using the treadmill for 25 minutes each day.” 

Happy to be back

While this most certainly helped, Emma and Rachel couldn’t wait to get Ella back to Neurokinex.  “Her trainer Rocky 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!” says Rachel.

Ella started back with three sessions a week with this intense programme bringing great results.  While Rachel and Emma had encouraged Ella to keep physically active with the treadmill, the precisely targeted therapies – to balance her asymmetrical frame, train her left foot to align better and to keep developing her fine motor skills – needed expert guidance and training.

“Ella was so happy to be back with Rocky and the Neurokinex team,” says Rachel.  “Ella loves people but being non-verbal, sometimes it can be hard for her to communicate and socialise,” she explains.  “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.

Plucky Soul

“Ella is such a plucky soul and we just want to do all we can to help her,” says Emma.  “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.” 

“Her ability to walk has made the biggest difference,” says Rachel. “Not only is she more mobile now, but she’s physically taller and safer too by not always being on the floor or sat down.  She has much more confidence and presence. 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.  Ella works hard at Neurokinex but they present it as fun: which is important because Ella is still a child and needs to have fun.”

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