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I am No Lance Armstrong – Cycling 500km Non-Stop to Raise Money and Awareness for OCNDS

Jennifer Sills • Jul 21, 2022
Hunter and Family

By Kevin Pilgrim


My name is Kevin Pilgrim. I will be attempting to cycle 500km non-stop within 24 hours with my friend and neighbour Lorenzo. Although I like to keep active, I am definitely NOT an avid cyclist and no Lance Armstrong, I will be attempting this on an entry-level road bike with limited training. Seeing my son overcome many difficulties daily has inspired me to take on this challenge to raise money and awareness for OCNDS and the CSNK2A1 Foundation.


Hunter’s “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 Hunter’s colourful medical history, we finally had an answer, which brought about many more questions. When we were told by our geneticist that Hunter was one of around 50 individuals that had been identified worldwide, our hearts sank, as parents, we knew our work was not done in finding answers for Hunter’s difficulties; this was just the beginning. With the rareness of the syndrome, there are 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 much 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 due to 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 daily. As parents, we couldn’t be prouder of him; the challenges he faces and overcomes due to OCNDS are astounding.


Link to fundraiser: https://www.justgiving.com/fundraising/500-24?fbclid=IwAR1Bu98nslJAkJGdizJEubm4wb97wVMZu-3Uyb5G3R_8RnSxLHZ-f7BlIWE

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Newborn Genetic Screenings

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By Penelope Gatlin • 05 Oct, 2023
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