In this video my wife Monica and I decide to step outside our comfort zone for the benefit of a charity we both feel passionate about. Both our children, Kyle and Ava Grace have a rare genetic disorder called KCNQ2.
KCNQ2 typically presents with seizures in the first week of life. Seizures appear as stiffening of the body (tonic) often associated with jerking and changes in breathing or heart rate. The seizures are usually quite frequent (many per day) and often difficult to treat. Typically, the seizures are associated with abnormal brain wave patterns on EEG during this time. The seizures in KCNQ2E often resolve within months to years but children have some degree of developmental impairment involving one or more domains (motor, social, language, cognition). This can range from mild to severe depending on a number of different factors. Some children may also have autistic features.
Monica and I want to thank Stephen Speakman for donating to this charity. We both knew it was important for us to help in any way we can, including taking part in eating some extremely hot Ramen noodles.
Watch the video below to see both Monica and I eat a whole bowl of Extremely Hot Spicy Ramen. It is something I will never forget!
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