Sarah's daughter’s Chiari Malformation causes her severe pain, but The Brain Changer Arts Project helps her love the physiotherapy she needs

In April 2016, Sarah’s daughter Faith was diagnosed with significant Chiari Malformation – where the bottom of the brain pushes down on the spinal canal – aged just four.

The youngster’s balance was bad and when she had started at nursery, staff picked up on her speech difficulties so referred her to a specialist.

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Karl enjoys spending time with his daughter

Karl, 35, was diagnosed with Chiari Malformation Type 1 – a surprisingly common condition where the bottom of the brain extends and puts pressure on the spinal cord, in 2016.

While the condition is most commonly diagnosed in adults, it is thought to often be present from birth and Karl had symptoms from when he was a teenager and spent eight years trying to get a diagnosis.

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Sarah at The Brain Charity in Liverpool

In 2014 while working as a teaching assistant, Sarah suffered a head injury which caused a serious brain trauma.

At first there didn’t seem to be much wrong other than a headache that persisted through the week.

Five days after the injury, Sarah woke up late and rushed out of her house.

When she sat in the driver’s seat of her car, she realised something was very wrong – her head had twisted 180 degrees and she was staring at her rear view window.

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Trina had a very demanding job working for an IT company in Liverpool’s historic Albert Docks when she was suddenly struck down by a subarachnoid brain haemorrhage (SAH) – a life-threatening stroke caused by bleeding into the space surrounding the brain – in November 2011.

With no warning symptoms whatsoever, her life was turned upside down overnight.

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Christine in hospital

Christine was diagnosed with epilepsy aged 13 months after having clusters of seizures.

Initially she was sent home by doctors who believed she was having febrile convulsions, which can be caused by a high fever.

But after numerous visits to A&E, her mum Clare was finally believed when Christine was admitted and infantile spasms, a rare form of epilepsy, were witnessed by staff.

Since then, the now 33-year-old has tried different medications and treatments to control her epilepsy, including an awake craniotomy in 2009 to remove the temporal lobe of her brain.

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Ian on Chemo

Ian was diagnosed with chronic peripheral neuropathy, a condition caused when nerves in the body’s extremities get damaged, four years ago during chemotherapy for bowel cancer.

At first doctors thought the symptoms would go away after chemotherapy stopped, but four years on he is still experiencing extreme pain, heightened sensitivity and unexplained sensations.

Ian had to give up work as a baker when he lost feeling in his hands and feet and could no longer feel the dough through his hands.

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Jane today

Aged just 13, Jane was hospitalised after a series of severe seizures – but as doctors didn’t know the cause of these, they couldn’t match her to the right medication to stop them.

Over the next eight weeks Jane was moved from her local hospital to Alder Hey, Liverpool’s specialist children’s hospital, where she had a muscle biopsy.

This led to her finally being diagnosed with Adult Onset Leigh Syndrome – a rare condition believed to affect around one in 100,000 people.

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Sonya with her children

In October 2017, Sonya was woken at four in the morning by a splitting headache and phoned an ambulance before collapsing.

Luckily, daughter Sophia, then just four years old, managed to go downstairs and let the paramedics in so they could rush her mum to hospital.

Sonya was told she had suffered a Subarachnoid Haemorrhage – a life-threatening type of stroke caused by bleeding on the surface of the brain.

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Self-employed Phillip found himself living on less than £5 a day after the lockdown closed his business overnight and he faced long delays before receiving Universal Credit.

As his living costs piled up, he became very concerned his precarious financial situation would worsen his psychogenic non-epileptic seizures (PNES), a neurological condition he has had since childhood.

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