A FATHER will be running four miles, every four hours, for 48 hours to raise awareness about a complex form of epilepsy that his son suffers from.
Brett Parsons, 48, will be running the 48 miles across Oxfordshire from Friday, June 17 until Father’s Day on June 19 for Dravet Syndrome UK, a charity which improves the lives of those affected by Dravet Syndrome.
It is a rare neurological condition that encompasses treatment-resistant epilepsy, intellectual disability and a spectrum of association conditions such as autism, ADHD and challenges with speech, mobility, eating and sleep.
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Mr Parsons, who lives in Wallingford, decided to take on the challenge as his young son Bradley, nine, was diagnosed with Dravet Syndrome at the age of one after a series of seizures and difficulties sleeping.
The first seizure was at five months old and lasted for 50 minutes. He struggled to breathe as he was taken to hospital.
For the next year and a half, Bradley would suffer from a seizure every three to four weeks before a genetic test was able to diagnose Dravet Syndrome.
He now has to take several different medications to try and help control the seizures and also has difficulties with learning, ASD/ADHD and the inability to function independently.
Mr Parsons, who has a second son called Samuel, said: “Despite Bradley’s condition, he really is the most remarkable, loving, kind, and thoughtful son - he lives his life to the full.
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“With this epic challenge, I want to honour Bradley’s outlook on life, as well as demonstrate the daily challenges we face as parents and carers to a loved one with this rare condition.
"Due to restless and worried nights with the high risk of nocturnal seizures, we are used to getting by with very little and frequently interrupted sleep, but we get ourselves up and carry on the next day, something that will be reflected in the start of each of my 4 mile circuits.
“Bradley loves repetition, he can spend hours throwing balls for dogs to fetch, or going up and down escalators in the shopping centre, so the repetitive nature of the circuits in the challenge have that aspect of his personality covered too.
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“I’m forever grateful to Dravet Syndrome UK as they have always been there for us - most importantly making us feel like we are not alone on our journey, but part of a unique and special family.”
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For more information, or to donate, visit https://www.justgiving.com/fundraising/brett-parsons3
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