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.