Motherhood and Dravet Syndrome a battle untold
The UNspecial Podcast · UNspecial LLC
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Show Notes
Host Zach welcomes Australian mom, advocate, and fitness business owner Bianca Coghlan to discuss her Hyrox race experience and her life raising five-year-old Skyler, who has Dravet syndrome, a genetic epilepsy caused by a mutation that cannot be fixed with brain surgery. Bianca describes Skyler’s first seizure at three months, diagnosis at six months, frequent daily myoclonic seizures and regular tonic-clonic seizures requiring rescue medication, and the constant 24/7 supervision, hospital calls, and school challenges that keep a parent on-site. She shares the emotional reality of “grief and gratitude,” relationship and scheduling strategies with her husband Daniel, impacts on work and friendships, and the family’s safety needs. Bianca explains starting Little Sky Eyes Foundation to fund grants for Australian families, especially costly safety beds not covered by NDIS.
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👉 If you haven't yet, make sure you read Special Dayz, a book about Zack's special education journey: https://www.amazon.com/Special-Dayz-Finding-God-Education/dp/B0FB2MXLGG/ref=mp_s_a_1_1?crid=3FXJ0P30N2DSA&dib=eyJ2IjoiMSJ9.XD98iO1ekOJzKB8AjmbMFT5SvQFaevPs3HnMM5a3sRuQA01jFDzyydaDbLlghmOjd66qy3Kyoanyq4Mrlx8dRoYT8BxFDVDqvjTeeh3Ok7I4yNgCX9b6hqfC0ck8nkszhVxwj7KWnIe2uhbCFL-k4LpHDv2DB36pjedqblmGD4s_olQEymMD_6OJ-6-ZAMoAA4P5uhrsmwLiuQtw3BLWQQ.2Kj7exdzRcLqdAPom-W4FlvFJYd4rmKLl39yIWSe7Ls&dib_tag=se&keywords=special+dayz&qid=1751127945&sprefix=special+dayz%2Caps%2C214&sr=8-1