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On Saturday 12th September, I will be taking part in Tough Mudder! Tough Mudder is a team-oriented 10-12 mile (18-20 km) obstacle course designed to test physical strength and mental grit. I will be raising money for Rose Blossom Trust. The vision of the Rose Blossom Trust is to increase awareness of Dravet Syndrome which is a rare and catastrophic condition that affects only 1 in 40,000 people. We aim to educate and share knowledge with the public about Dravet Syndrome. Our intention is for the Trust to give a little ‘sunshine’ to families who care for an child or adult with Dravet Syndrome. Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI), is a very rare and catastrophic form of intractable epilepsy that begins in infancy. Initial seizures are most often prolonged events and in the second year of life other seizure types begin to emerge. Development remains on track initially, with plateaus and a progressive decline typically beginning in the second year of life. Individuals with Dravet syndrome face a higher incidence of SUDEP (sudden unexplained death in epilepsy) and have associated conditions, which also need to be properly treated and managed. These conditions include:

  • behavioural and developmental delays,
  • movement and balance issues,
  • orthopedic conditions,
  • delayed language and speech issues,
  • growth and nutrition issues,
  • sleeping difficulties,
  • chronic infections,
  • sensory integration disorders,
  • disruptions of the autonomic nervous system (which regulates things such as body temperature and sweating)
Children with Dravet syndrome do not outgrow this condition and it affects every aspect of their daily lives.www.dravet.org.uk www.roseblossomtrust.co.uk

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£265.00 raised of £100.00 target by 9 supporters

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About the good cause

Rose Blossom Trust Rose Blossom Trust

Helping the lives of families living with Dravet Syndrome.

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