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Independence for Amelia

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This is Amelia, our amazing friend.  She is 16 years old and she is living with CRPS  or Complex Regional Pain Syndrome. Little is known about this debilitating and disabling condition which causes chronic and extreme pain; consequently there is no cure. CRPS is triggered by minor injury; in Amelia’s case this was a hairline fracture from playing football in September 2016. Since then, despite the fracture healing itself quickly, her foot remained in a state of intense pain and swelling, which then began to spread up her leg and has been consistent for the last 2 years, putting a stop to her football and other hobbies. Amelia now cannot bear the slightest touch to her leg which has left her unable to walk and she now relies on a wheelchair or crutches to get around.

Unfortunately this meant that Amelia’s fulfilment of life, especially school attendance, deteriorated to the point where spending a full day at school was simply too painful and exhausting. She has endured months of intensive physiotherapy and has spent two years in and out of hospital. 

The Amelia we knew and loved before this crippling illness was full of optimism, enthusiasm and kindness towards others and it has been heartbreaking to witness her struggle to maintain her infectious and bubbly persona.   Amelia does have extraordinary levels of courage and determination and is incredibly bright academically, so with the support of her amazing family, she took on five GCSEs this summer.  Against all the odds, and being in perpetual pain, she passed all five GCSEs, including achieving 3 As; an incredible feat!

For many, college symbolises a new lease of independence, which for Amelia will be harder to achieve. There is certain equipment required in order for her to experience some of the same freedoms as her peers. Recently, her family bought her a new lightweight wheelchair, costing over £3,000, as the one provided by the NHS was simply too heavy for Amelia to push by herself. The new wheelchair has increased her mobility, but her family are looking for other ways to help further improve her independence, such as some lightweight carbon fibre crutches, a FreeWheel to help over rough terrain or a SmartDrive power assist motor to fit to her wheelchair for hills or when she is low on energy.  They are also considering other private therapies not available on the NHS.  Unfortunately, such equipment and services are expensive, for example, the SmartDrive motor is in excess of £4,000.  This would be a costly investment for any family so we urge you to donate what you can to help this resilient and inspirational girl and her amazingly supportive and loving family.

Thank you for your generosity.  If you cannot donate, please could we ask that you share this post as widely as you can so that we can raise awareness of this condition and help Amelia to regain some independence.

Tilly and Jess (Amelia’s friends)

Further information on CRPS can be found by clicking the links below.

https://crps-uk.org/what-is-crps/ 

https://www.nhs.uk/conditions/complex-regional-pain-syndrome/ 

https://www.burningnightscrps.org 

Examples of the equipment Amelia needs:

Crutches (approx £400) 

FreeWheel (approx £400) 

SmartDrive (approx £4500)
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Donations 

  • Julia Lovejoy-brinkman
    • £25 
    • 5 yrs
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Fundraising team (2)

Tilly & Jess
Organizer
Cheryl Wannell
Beneficiary
Jessica Bury
Team member

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