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Charlie: a little boy with Cerebral Palsy who enjoys physical activity

Lucy Stickland
Lucy Stickland
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Charlie stands in his Innowalk

Charlie has recently discovered the joy of movement and physical activity in an upright and weight-bearing position. Due to his severe disability and chronic lung disease, he has benefited from using the Innowalk, an assistive motorised and dynamic standing device. The Innowalk, has been a life-changing intervention for him by reducing the amount of supplementary oxygen he requires on a daily basis.

In this article you can read about:

  • Charlie and his family
  • Need for 24 hour care management
  • Discovering dynamic standing
  • The effect of regular activity
  • Hopes for the future 

Charlie and his family 

Three-year-old Charlie from London lives with his parents, Ananda and Darren and older brother, Dylan. After complications at birth, which led to hypoxic-ischaemic encephalopathy (HIE), Charlie was diagnosed with quadriplegic cerebral palsy (GMFCS V). Despite some of the challenges he faces day to day, he is a very happy boy and loves to explore new places outdoors with his family. He especially adores listening to music with his music therapist, Roxanne! 

What is hypoxic-ischaemic encephalopathy (HIE)?
Hypoxic-ischaemic encephalopathy (HIE) occurs when there is a lack of oxygen and/or blood supply to the brain. HIE affects the brain, but the effects of low oxygen or blood flow can also cause problems to other organs. Some children will experience no health issues – or only mild to moderate effects, while others have more severe and permanent disability.  

Need for 24-hour care management 

Charlie requires a great deal of physical support, as well as various postural devices and equipment, in order to help him move and change his position throughout the day.  He has little active movement in his legs, and some dystonic movement in his arms. Keeping his head upright is also challenging for Charlie, due to his low muscle tone.   


Read more:
Why 24-hour posture care management is key

Respiratory challenges

As well as his physical needs,  Charlie also has a compromised respiratory system with a diagnosis of chronic lung disease. Since birth, Charlie has been dependent on continuous supplementary oxygen in order for him to maintain his oxygen saturation levels. Charlie’s complex presentation and diagnosis means that he requires very specialist, round-the-clock care.  His breathing difficulties and poor swallow make him at high risk of aspiration, which can lead to pneumonia. This means that he has spent much of his life in and out of hospital. Charlie has a rigorous daily routine to help manage his respiratory health and prevent infection, involving lots of chest physio, medication and suctioning to clear his airways.  

Ananda, Charlies mother, tells us that these interventions form the framework of his day, as the level of effort Charlie requires for breathing and clearing secretions directly impacts the amount of energy that he has left for other activities.  

Physical activity becoming more demanding

Charlie enjoys movement - he regularly joins his mum Ananda in Yoga sessions, and he loves hydrotherapy, which helps him to relax his muscles. As Charlie is growing, providing him with therapeutic physical handling required is becoming more difficult.   

Discovering dynamic standing 

Charlie was first introduced the Innowalk at Kids Physio London, a clinic providing specialist physiotherapy to children with neurological conditions.  

“He demonstrated amazing head control,” Ananda tells us of his first experience in the dynamic standing device. Ananda was keen to explore ways that Charlie could access the device on a regular basis at home, and a three week loan of an Innowalk was organised.

Charlie Moving in Innowalk - standing   

The effect of regular activity  

After just one week of using the Innowalk at home, Charlie, who had previously been dependent on having supplementary oxygen continuously, was no longer needing it for his daytime nap or sleeping overnight. This was for the first time in his life. The improvement in his breathing meant that he was no longer depending on so many invasive procedures throughout the day.   

 

As well as the respiratory benefits, Charlie was also becoming more alert and was sleeping at more regular times, Ananda tells us.


Having one long nap in the middle of the day meant that Charlie was also able to take part in more family activities. Ananda noticed that Charlie’s range of movement and muscle tightness in his knees improved after two weeks of dynamic standing, and that his hands and feet were warmer from improved circulation. In addition, Charlie was starting to be more communicative due to improved head control.  
 
 

In summary, the benefits that Charlie gained within just a few weeks included:   

  • Reduced oxygen requirements 
  • Increased alertness and energy levels 
  • Improved sleep pattern overall 
  • Improved communication 
  • Increased circulation to hands and feet 
  • Increased range of movement in his legs 

The introduction of regular dynamic standing helped not only Charlie and his needs, but all of those who care for him. It eased some of the moving and handling challenges and, through his improved health, it meant that the whole family were able to take part in more activities outside. 

Charlie has recently received his own Innowalk and continues to benefit greatly from using it, particularly with regard to respiratory health. He has been using it twice a day, morning and evening. For the majority of the time, he has been able to stay off his supplementary oxygen, which has been life-changing.   

Hopes for the future  

“Our hopes are ever changing. Something the Innowalk gave us that we didn’t foresee was a life without oxygen. Or that we could step down some of his medical input and that life could look quite different,” Ananda concludes.  

We look forward to following Charlie and his progress using the Innowalk.

24-hour postural care management

Lucy Stickland
Lucy Stickland

Lucy Stickland previously worked as a physiotherapist for the NHS in London before joining the Made for Movement team. As Product Specialist, she feels passionate that everybody should have the opportunity to access movement and exercise, regardless of their functional ability. Lucy loves to see the joy and positive health benefits that physical activity brings to the individuals she meets in her role, and the significant impact it can have on their lives.

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