Charity #: 802775791RR0001
Dilara Leamen Bio
Dilara Leamen is a very compassionate, mature and determined 11 year old. She had to grow up quickly when her younger brother Aydin was diagnosed with Intractable Epilepsy. Having witnessed her brother’s many seizures, Dilara decided that she wanted to do more than just watch what was happening to her brother, she wanted to help her brother. Dilara became active with Epilepsy Durham as an ambassador and created her own online advocacy group, PurplWav. She has represented and spoken at many events in the community and her school. On Purple Day 2016, Dilara gave an interview on CKDO. She is a strong proponent of anyone, especially children, who can’t stand up and speak for themselves.
Aydin Leamen was a very active and precocious 5 year old when he started displaying tick like movements. As time went on, they became more frequent, up to a 100 a day, and exaggerated. Aydin was diagnosed with Intractable Epilepsy and put on very strong medication. Initially he was unsure what was happening and resisted taking medication. The medication “changed” Aydin. He became angry, withdrawn, no longer interested in soccer or active sports. He seemed to lose his voice – confused and upset all the time questioning me “why me”. The initial medication made Aydin’s seizures worse culminating in a 13 minute seizure classified as Status epilepticus. His meds were once again changed with side effects that caused uncontrollable rage and behavioural outbursts. More medications and stays in hospital for EEG testing have yet to yield a solution for Aydin’s night time seizures. To help Aydin, Epilepsy Durham invited him to become an ambassador for Epilepsy. He suddenly felt a purpose and found his voice. Instead of letting Epilepsy control him, Aydin has chosen to control it through education and advocacy. On Purple Day 2016, Aydin, with his sister, presented a slide show with videos to all the children at Chris Hadfield PS on what Epilepsy is and how to treat those with Epilepsy. Since then they have been vocal advocates for Epilepsy online and at various events.
The Carion Fenn Foundation Ambassadors are key in helping to get the work out through attending Events, speaking and getting the word out there about Rare Diseases Affecting our communities.
Syringomyelia & Chiari Malformation Ambassador
Eithan is an Ambassador for the Carion Fenn Foundation for 7 Years. He doesn't miss a flag raisings we do. He's seen in pictures raising the Flag with Mayors of Town of Ajax and City Pickering.
Eithan is the son of Carion Fenn, born following her diagnoses of Syringomyelia & Chiari Malformation. Through working with his mom in advocating for others, Eithan has developed the passion for helping others working with his mom. Eithan has a heart of cold and he's developed a passion for knowing when someone isn't doing too well. He often goes around town asking, are you ok? can I give you an hug. As you see his mom's compassion for others is apart of who Eithan is.
Education, Support & Resources for RARE Disease Management!
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