On Sunday 31st May, 17 of us from Gemini Wealth Group will take on the Sutton Coldfield Fun Run to continue to support PANS PANDAS UK.

PANS PANDAS UK (PPUK) has been one of our charity partners now for 4 years and in that time we have already raised over £20,000. We were inspired by Isaac’s story and how Isaac and his family have been supported by PPUK. PPUK are working hard to spread awareness of this awful and little known condition as well as to implement UK guidelines and support those impacted.

Please pledge whatever you can to help us raise as much as possible.

Our challenge is the 8.4 mile run taking in the beautiful Sutton Park. Some of us will race, some will jog and others will walk, but what matters is the effort everyone is putting in to raise much needed awareness and funds for PPUK.

Isaac’s Dad Mark is one of our Directors here at Gemini and has witnessed first-hand the devasting impact that this condition has had on his young Son and on many other children. Mark has made it his mission to share Isaac’s story because with early recognition and intervention when a child first becomes ill, their life does not have to pan out how Isaac’s has for the past 6 years. You can follow Mark’s story on X by searching @notestomyboy.

Thank you all

Isaac’s story

Suddenly and without warning, aged 9, Isaac changed almost overnight.

He went from being a happy, funny, confident, and popular kid to saying he wanted to die, being consumed by OCD, refusing food, water and sleep as well as becoming unable to wash or dress.

This was in early 2020 and we spent a year trying to find out what was wrong with him as any parent would. There were no answers, other than suggestions that he had suffered an autistic breakdown. We were told that he was “high functioning autistic” but had managed to mask this since birth and this had caused a severe psychological breakdown.

This didn’t make any sense to us, so we kept looking and asking questions to try to find answers. After a year of severe illness, Isaac was in a routine that seemed alien to us but seemed to give him comfort. He no longer washed, dressed, barely spoke, and never left the house. He was unable to participate in any form of education even from home. Most of his waking hours were consumed with bizarre OCD rituals.

After the worst year of our lives, we read about PANS PANDAS. In very simple terms, this is when a child suffers post infection brain inflammation which is characterised by sudden and severe disturbing personality changes. Isaac had a history of Scarlett Fever which we think may have been his trigger.

We found the charity PANS PANDAS UK (PPUK) and suddenly things started to make sense. We immediately felt like we were talking to people who knew what we were going through, what had happened to him what we should do about it.

In his first year of illness, as the condition was deemed to be a “mental” condition, Isaac was placed on drugs to treat mental illness. These were powerful and had no beneficial impact on him, instead they caused his behaviour to become even more disturbing. When we spoke to PPUK they opened our mind to this being a physical illness which was manifesting as a mental illness with the treatment pathways being totally different, focusing more on simpler anti-inflammatory and anti-biotic treatments rather than anti-psychotics.

We thought we had it cracked, but then a new battle started. Despite PP being recognized in many other parts of the world, and by the World Health Organisation, it was controversial in the UK. There was no formal path for medics to follow, which meant accessing care and treatment was impossible.

PPUK have been instrumental in working with the NHS and are targeting formal UK clinical guidelines within 12 months. This is only the start though and we must support them to push on with all their amazing work to support these children and their families.

6 years on and Isaac has shown significant recent improvements and a return to school is on the cards. He remains in contact only with only his Mom and Sister who he lives with and has had no contact with his Dad, wider family or any friends now for 6 years.

PANS PANDAS UK are the UK’s only charity supporting families living with the neuropsychiatric conditions PANS and PANDAS. These conditions often develop suddenly, sometimes literally overnight, and can be both devastating and frightening.

With your help today we can build a future where every family living with PANS or PANDAS can access the right care pathway, treatment and support when they need it most.

Thank you

For more information please visit our website www.panspandas.org.uk