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On 17th June we will be climbing Ben Nevis!

As many of you will know our son Arlo has Dravet Syndrome.  He was born normally and we were very pleased with our healthy baby boy. All was well until Arlo had is first seizure, lasting over 20 minutes, at the age of just 10 weeks.  What followed for the next three years were many seizures that could start at any moment, day or night.  They would often last up to two hours. We were frequent visitors to the high dependency and intensive care units of many hospitals while doctors tried to stop his seizures and work out what was happening. It was completely traumatic, beyond stressful and extremely isolating.

Finally, at the age of three and half, Arlo was diagnosed with Dravet Syndrome, a rare and catastrophic form of Epilepsy. It is not the diagnosis any parent wants for their little boy but the slim silver lining was that we found Dravet Syndrome UK.  It became a lifeline to our family. It is a small charity but does so much for the families they support.  They run a busy forum, enabling families to share the day-to-day stresses of life with such an unpredictable condition in a safe place. They provide families with a nighttime seizure monitors, arrange  gatherings, provide grants for older children and adults, run a family and professional conference and fund research into this rare but devastating life-limiting condition.

Arlo is now nine and continues to have seizures every night, but they aren't as severe, lasting only 30 seconds to 4 minutes.  He has an increased risk of SUDEP (Sudden Unexplained Death in Epilepsy), he has learning difficulties but is one of the happiest people we know and he brings so much joy to our lives.  He is our hero.   

We are raising money to support the charity that supports us as a family and for all the children/adults like Arlo who they help.   

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