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Ella (the subject of our story) and her sister Poppy playing in a field of flowers

“Ella is a child: her rehab needs to be fun”

Ella was born at 24 weeks weighing just 650g: she spent the first six months of her life, and was then in and out of hospital for her first four years to manage the impact of a brain bleed shortly after birth, cerebral palsy, a chronic lung condition and recurring chest infections.

Here, her mum, Rachel Jarvis, shares her story:

“We were told Ella would never do anything for herself – not eat, drink, sit, stand or walk. Now seven years old, she has surpassed all medical expectations and happily sits independently, feeds herself with a spoon and drinks with a special cup.

“Ella was offered neurorehabilitation with Neurokinex, a specialist provider of neurological activity-based rehabilitation and she started at Neurokinex Kids in January 2019 as a lucky recipient of a special bursary made available thanks to a donation from the Peter Harrison Foundation Community Fund. She progressed quickly from walking on the Locomotor Trainer treadmill fully supported by a harness to walking independently for up to 10 minutes just holding onto the handles.

“Her specialist therapy helps Ella manage her cerebral palsy symptoms. She works hard there to build and maintain her core and upper body strength and does stepping therapy to encourage her to walk more and use her wheelchair less. Having independence is crucial to her. Being able to get things herself, wheel herself safely and transfer smoothly mean she doesn’t have to rely on us for everything. She is getting bigger and heavier now so the fact she can walk backwards to her chair and lift herself is a huge relief to me and my wife Emma. We believe that the more mobility you have, the more you can access opportunities: Ella’s increasing independence has made a world of difference to us as a family.

“Neurokinex has helped Ella build up her core strength to enable her to hold her bodyweight when transferring to and from her wheelchair and going from sitting to standing. Her physical development is amazing but also incredible is how her confidence has soared since she started to gain more independence in terms of fetching and carrying things, feeding herself and playing with her little sister Poppy, 3.

“Ella gaining the ability to walk was a breakthrough moment for us all. Not only is she more mobile now but she physically stands taller, has more presence and engages better with her surroundings.

“When lockdown hit, we were a bit lost for a while. Our priority was to maintain the improvements to Ella’s walking so we bought a small treadmill for her to use at home and set this up in the family wet room where we already have a hoist in place. With guidance from Neurokinex by phone and zoom, we got Ella using the treadmill and within a few weeks she was up to doing 25 minutes a day.

“Ella started back at Neurokinex after lockdown with three sessions a week in an intense programme that brought great results. We realised that while the treadmill at home had kept Ella moving, 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 does one-hour-long activity-based rehabilitation sessions which typically involve 10-15 minutes on the treadmill at the start. She likes to have structure so her sessions are quite similar while being progressive and include stepping, crawling, frame walking and rolling. They also 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 her independence.

Ella enjoying her work at Neurokinex

“As Ella is non-verbal it can be hard for her to communicate and socialise. Rocky, her lead trainer, 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!

“Our goal is for Ella to be as independent and happy as possible, whatever that means for her. She works hard at Neurokinex but they present it as fun: that’s important because Ella is a child and her rehab needs to be fun.”

This article was written by Neurokinex

Neurokinex is the UK’s leading provider of neurological activity-based rehabilitation which sets out to redefine possibilities for people with paralysis.

A not-for-profit organisation, it’s dedicated to providing innovative rehabilitation and wellness programmes for individuals living with various forms of paralysis. It currently has sites at Hemel, Gatwick and Bristol. It has a specialist Neurokinex Kids facility that is designed with children in mind and packed with age-appropriate equipment in a bright and colourful setting that youngsters enjoy.

Find out more about Neurokinex in their Brain Injury Group services profile: www.braininjurygroup.co.uk/services-a-z/neurokinex/

About Brain Injury Group

Brain Injury Group was set up in 2011 to provide people affected by brain injury with a focal point to find people with specialist knowledge of brain injuries to assist them with legal, financial and welfare advice.

In addition to our legal and welfare advice service, our popular website features an A-Z of services and goods specifically of interest to those affected by brain injury, their families and the professionals who support them.

Brain Injury Group is a provider of training to solicitors, case managers, health and social care professional on an array of brain injury topics.

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Whether you are considering making a claim, need other specialist legal advice, are looking for information on continuing healthcare funding or welfare benefits, or access to a broad range of services and professional support through our online directory, the Brain Injury Group provides a gateway to the support you need.

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