So...... after a two year hiatus we're back!!

This time in September 2024 I'm planning on running 5km every hour for 24hrs (Total 120km).

I'll be raising money for the CSNK2A1 foundation and Thriftwoods school.

Our son Hunter was diagnosed in 2021 with a rare genetic syndrome called OCNDS and the CSNK2A1 foundation was set up to assist individuals affected by OCNDS so that they have the opportunities and support necessary for happy and full lives.

Since September 2023 Hunter has attended Triftwoods school which is a school in Chelmsford, Essex catering for children and young people aged 7 to 19 years who have moderate learning difficulties - including multiple and complex needs - such as autism, speech, language and social communication difficulties.

With 2022's 500km ride in 24hrs we raised over £4000, this time let's see if we can't raise even more!

Hunters “rare” journey.

This is our son Hunter. We are a family of four who live in Chelmsford, Essex. Hunter was diagnosed in August 2021 with Okur Chung Neurodevelopmental Syndrome (OCNDS). After many years of searching for reasons for Hunters colourful medical history, we finally had an answer, which in turn brought about many more questions. When we were told by our geneticist that Hunter was one of around 50 individuals that had been identified world wide, our hearts sank, as parents we knew our work was not done in finding answers for Hunters difficulties, this was just the beginning. With the rareness of the syndrome there is still so many unknowns.

The relief we experienced when we discovered the CSNK2A1 foundation was overwhelming, to find a fantastic support network of other parents and individuals affected by OCNDS was beyond words. We finally had a community of others to identify with. To date there are around 200 individuals diagnosed globally.

Hunter was in and out of hospital as a baby with recurrent urine infections and was diagnosed shortly after birth with the kidney condition MCDK. It was from there on that Hunter began to gather doctors and medical specialists for a variety of developmental delays and health related issues.

Hunter is Autistic, struggles with communication and experiences sensory difficulties. He is a lot smaller than his peers and has difficulty with fine and gross motor skills caused by hypermobility and hypotonia. He also wears glasses for astigmatism in both eyes. These are just some of the challenges Hunter faces as a result of his diagnosis and the symptoms of OCNDS can vary widely for each individual.

Hunter is the most tenacious, adorable, inquisitive little boy who thrives in the face of his diagnosis. He continues to amaze us with his strength of character and resilience, and is making huge strides on a daily basis. As parents we couldn’t be prouder of him, the challenges he faces and overcomes due to OCNDS are astounding.