On Sunday 1st June, a dozen of us from Gemini Wealth Group will take on the Sutton Coldfield Fun Run to raise money for PANS PANDAS UK (PPUK).

Our challenge is a 8.4 mile run through 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.

PANS PANDAS UK has been a charity partner of ours for three years, in that time we've raised over £10,000 to support their important work to get recognition for these awful and little known conditions. So, that one day soon, established clinical guidelines and support will be available for all families at their moment of need.

Mark, one of our Directors here at Gemini, has witnessed first-hand the devasting impact of this condition on his young son, Isaac. 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 5 years. You can follow Mark’s story on X by searching @notestomyboy.

The inspiration for this challenge comes from Isaac's story and the support his family has received from PPUK throughout their journey.

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

Read Isaac's story below 👇

Isaac’s story

Suddenly and without warning, when he was 9, Isaac changed almost overnight.

He went from being a happy, funny, confident, and popular kid to saying he wanted to die, being consumer by OCD, refusing food, water and sleep as well as refusing 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 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 and what had happened to him and most importantly 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, that was manifesting as a mental illness. It’s no less complicated, but the treatment pathways are 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 Organistation, 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 and we must support them to push on with all their amazing work to support these children and their families.

5 years on and Isaac, despite showing some signs of improvement, is still left following a very different life. He hasn’t left the house, dressed or participated in any form of education for 5 years. He sees nobody apart from his Mom and younger Sister. He’s now 15 and as he lives with his Mum, Mark hasn’t seen him or spoken to him in years.

Thank you all