A couple from Newton Abbot will cycle 102 miles from Ilfracombe to Plymouth later this month to raise awareness and funds for families affected by PANS and PANDAS.

Simon and Claire Holden will be setting off from Ilfracombe on July 20 and hope to complete the challenge in two days. The couple will be joined for part of the ride by their children, 11-year-old Ava and 8-year-old Henry.

The family has first-hand experience of the devastating impact of PANS and PANDAS and of the limited awareness and treatment available under the NHS.

Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Paediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal Infection (PANDAS) are conditions that cause a sudden and severe onset of neuropsychiatric symptoms in children, such as OCD, anxiety, seizures and tics.

It took nearly two years for their daughter Ava to be diagnosed with PANDAS. She first became unwell in September 2022 with a sudden onset of extreme anxiety, terrifying panic attacks, hallucinations, OCD around vomit and germs, absence seizures and painful muscle spasms. ‘Ava described it as her brain was ‘on fire’, she couldn’t control her feelings, or thoughts,’ explained Claire.

On the left is Ava while suffering with PANDAS and on the right is a picture of her now.
On the left is Ava while suffering with PANDAS and on the right is a picture of her now. (Contributed)

Ava’s GP put the symptoms down to having anxiety and poor mental health following a family bereavement 18 months previously and referred her to Child and Adolescent Mental Health Services (CAMHS). 

Ava’s episodes were so extreme that her parents had to call the mental health crisis team and, on more than one occasion, an ambulance. ‘We had to be sectioned in A&E as her anxiety was off the scale and she was uncontrollable,’ Claire recalled. She was admitted to a ward where nurses struggled to calm Ava and required parental consent to sedate her.

Through all of this, Claire and Simon were convinced the symptoms were not mental health-related but down to something else. Eventually Claire demanded that the GP take a ‘strep’ throat swab.

A positive test for Streptococcal bacteria and Ava’s ongoing symptoms resulted in a long-awaited diagnosis of PANDAS under a paediatric neurologist from Bristol Children's Hospital. Once diagnosed, Ava started an extended course of antibiotics and ‘slowly our happy girl started to return, and many symptoms disappeared almost instantly,’ Claire said. 

‘It is terrifying to think what would have happened to Ava’s brain if we had left her in this state, more awareness is needed to ensure no other children are misdiagnosed and left to suffer like our daughter,’ Claire asserted. 

When Simon and Claire saw the PANDAS UK invitation to take on a challenge in July, Simon jumped at the chance to cycle a bucket-list route. ‘I had thought I would put myself forward for a 10k run,’ Claire admitted.  ‘But Simon didn’t feel that was challenging enough. So, in a moment of madness, I agreed to cycling 102 miles instead.’

Claire hopes that ‘adrenaline, determination and the knowledge that this challenge is helping raise much needed awareness and funds for PANS PANDAS UK’ will get her through.

To support Simon and Claire, please visit their JustGiving page at https://www.justgiving.com/page/holden-coast-to-coast?newPage=true