A FUNDING campaign has raised thousands in aid of a Reading youngster who needs specialist treatment.
Ruby, 5, has been diagnosed with autism and global development delay, and is non-verbal, and in May last year began to develop a Scarlett Fever rash.
After becoming very unwell, she woke up with an acute onset of symptoms of Obsessive Compulsive Disorder.
She was unable to eat or drink and also began to pull out her hair, causing her to stop attending her nursery.
Her parents had to drive her in the car to keep her calm and able to sleep, which in turn caused them to become sleep deprived too.
Ruby has experienced compulsions such as needing to pick up and drop items multiple times, repeatedly passing through doorways, and turning lights off and on.
She has also become distressed if rooms were changed or adjusted while she was outside of them, or if others moved, and had difficulty using the bathroom.
Symptoms lasted for around 3 months before slowly subsiding.
Then last month, Ruby caught a virus which required two separate hospital visits for difficulty breathing, which also brought back her OCD symptoms.
She has also developed a tick which sees her kicking the floor with one leg, which causes considerable distress.
Her parents have sought medical advice but have only been offered, which they explain is not possible for Ruby.
Now they are seeking treatment for paediatric autoimmune neuropsychiatric disorders associated with Streptococcal infection, or PANDAS; a neuropsychiatric condition which is triggered by a misdirected immune response.
They explained that they have had particular difficulty getting a diagnosis through the NHS.
In September last year ministers debated the status of Paediatric Acute-onset Neuropsychiatric Syndrome (PANS) of which PANDAS is a subset.
The debate acknowledged that there was no “overall medical consensus” in the UK despite the conditions being recognised by the World Health Organisation.
The Royal College of Nursing notes that PANS/PANDAS are often misdiagnosed or not diagnosed at all due to “low levels of awareness.”
Ruby’s parents are aiming to fund specialist diagnosis and treatment, which will cost around £3,000.
Their crowd funding page has raised £2,000 since it was launched in late March.
More details about the fundraising efforts can be found over on the GoFundMe page for Ruby’s treatment via: gofundme.com/f/changing-our-5-year-old-daughters-life
