Iwan is happy boy and loves his family, he is super clever at jigsaw puzzles, enjoys baking and helps to get out all of the ingredients and oven gloves.  He loves soft play and swimming. He would like to go to the beach every day but is equally as happy with his ipad or some bubbles.

Iwan had his first seizure at 8 months it lasted 50 minutes and ended up in A&E.  This became a regular event with him having up to 8 prolonged seizures a day needing 'rescue medicines', as he couldn’t stop his seizures, without medical help.

His seizures are better controlled as he takes 3 anti epileptic drugs twice a day. Children with Dravet (Iwan included) also have hypermobilty and ataxia and are unsteady and require help getting around. Iwan was diagnosed with Autism also which is common in Dravet.  He is impulsive and unpredictable and has no awareness of danger.  Despite his complex condition he is loved by his family and brings happiness to those he meets. 

To learn more about Dravet Syndrome click here http://www.dravet.org.uk/.

Find out about some of the other children taking part in the Rare Project by clicking here.

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