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Amelia's Defiance Fund raised £40,040 from 803 supporters
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Closed 29/08/2020
Weʼve raised £40,040 to help fund our daughter's rehabilitation following a life threatening brain injury.
- Funded on Saturday, 29th August 2020
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Story
Amelia's Defiance fund
On 3rd Jan 2020 our bubbly, beautiful and intelligent 17 year old, Amelia, collapsed with an AVM - a rare non malignant brain tumour - which caused a massive brain bleed and brain damage.
We did not know she was ill, there was no warning, she displayed no symptoms - she simply collapsed.
It is only thanks to the super powers of the Air Ambulance, paramedics and the team of neurosurgeons, doctors and nurses that Amelia is alive today. They saved her. But now Covid-19 threatens to undo their miraculous work.
An emergency craniotomy has left her with a large part of her skull missing, as a result of this she has now developed a syndrome which causes her motor and cognitive abilities to increasingly deteriorate. The current solution is to lie her flat for most of the day which means she cannot have all her much needed rehab. Yet the clock on her NHS rehab budget continues to count down. The rehab unit she is in want to discharge her into a care home to await her procedure and try to "save" her allocated budget. This is not an option for our eldest baby girl.
The only real cure is an operation to have the skull replaced - a cranioplasty. In NHS terms, this procedure is elective, and in the current Covid-19 crisis elective operations are suspended so we are at an impasse.
Despite all her challenges Amelia's defiance and determination to overcome is inspiring. Amelia cannot talk or walk, yet she can smile at those she loves, gives a thumbs up or down to questions, she is learning to dress herself, brush her hair and her teeth. She strokes the face of her father and siblings when they video call - they hasn't seen her in a month because her unit is in Covid-19 lockdown so only I, her mum, can visit.
Her prognosis has the potential to be good - yet she needs a cranioplasty and rehabilitation. The former cannot be performed because of Covid-19 suspended surgeries, the latter because she has not had the former.
There is a long road ahead - she will need physio therapy, occupational therapy, speech and language therapy, potentially a wheelchair for a sustained period of time, and maybe support into her adulthood. A brain injury is like a thumb print - each is unique. The outcome different every time.
Amelia is at the start of her young adult life and deserves every opportunity life has to offer - or at the very least not to have it snatched away because she happened to fall dangerously ill at the start of a pandemic.
Updates
6
- 3 years ago
Amelia's Defiance Fund
3 years agoMerry Christmas everyone! We just wanted to let you all know that Amelia is now home permanently, and thriving! Thanks to your generosity we have made adaptations so she can safely come home, and made plans to continue her physio, speech therapies, bought an erg (she wants to get back on the water!) etc that discontinue once discharged but are still needed to continue her recovery to full health. There are many other ways she will benefit in the future and it is thanks to you all. Merry Christmas, looking forward to a brighter, better 2021
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- 4 years ago
Amelia's Defiance Fund
4 years agoThis has been a real red letter week for Amelia. She has walked 10metres with the aid of a frame and the physios plus she has started to tentatively say a few words. It is still really early days - we are only 3 weeks post Cranioplasty - but she continues to defy the odds and her clinicians expectations. Thank you for your ongoing love and support. xx
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- 4 years ago
Amelia's Defiance Fund
4 years agoAmelia has had a tiring week but already there are signs that Amelia is becoming Amelia again. Since the operation she is more alert, aware and engaged. However, we are under no illusion as to the challenges she now faces. Speech has yet to return, mobility is still limited but there are positive signs. Only time and a lot of hard work will tell. Amelia has never been work shy and we are in awe of her resilience and determination to succeed. Thank you for your ongoing support, positivity and love
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Amelia's Defiance Fund started crowdfunding
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Supporters
803
Sarah Mcdonald
Aug 15, 2020
Best wishes for a speedy recoverySimon and Sarah Mcdonald
£40.00
Ewan Jones
Aug 5, 2020
Anonymous
Aug 3, 2020
From the Marlow 89ers
£1,240.00
Anonymous
Jul 28, 2020
With best wishes from Irene, Rhodri's gran
£10.00
An Anthony
Jul 27, 2020
Wishes for Amelia and family
£30.00
Nan and Bernard Coomey
Jul 16, 2020
Best Wishes and love for your recovery. xxx
£20.00
Anonymous
Jun 30, 2020
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