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Special Books by Special Kids - Mel's Interview
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About This Title
Mel's interview was just published and can be viewed by clicking here.
Mel is diagnosed with thiamine transporter deficiency, a rare genetic condition that affects her movement and ability to speak. As a result, she is fully dependent on caregivers for personal care. Mel also communicates using an eye gaze machine that tracks her eyes, allowing her to select words, share her thoughts, and even write scripts about vampires falling in love.
When Mel first became ill as a baby, her family struggled to find answers. Little was known about the condition when Mel finally received the correct diagnosis years later. Today, they share her story to help other families recognize it sooner. Early diagnosis and treatment with high doses of thiamine (vitamin B1) and biotin (vitamin B7) can improve outcomes and may help prevent lasting neurological damage.
Mel also wants people to know that using assistive technology to communicate does not mean she needs help understanding. People sometimes assume she isn’t listening and discuss personal things in front of her. But Mel loves a little drama, and will go home and share the gossip with her mom. She wants others to talk directly to her and give her time to respond.
Mel, her family, and I have been in contact for years. She has been excited about this interview for a long time. I'm happy the logistics finally lined up and we were able to meet and do the interview. Thank you for making it possible to provide a platform for Mel to share her story. Your support on Patreon makes it possible to keep telling these important stories. Thank you!
Mel's interview was just published and can be viewed by clicking here.
Mel is diagnosed with thiamine transporter deficiency, a rare genetic condition that affects her movement and ability to speak. As a result, she is fully dependent on caregivers for personal care. Mel also communicates using an eye gaze machine that tracks her eyes, allowing her to select words, share her thoughts, and even write scripts about vampires falling in love.
When Mel first became ill as a baby, her family struggled to find answers. Little was known about the condition when Mel finally received the correct diagnosis years later. Today, they share her story to help other families recognize it sooner. Early diagnosis and treatment with high doses of thiamine (vitamin B1) and biotin (vitamin B7) can improve outcomes and may help prevent lasting neurological damage.
Mel also wants people to know that using assistive technology to communicate does not mean she needs help understanding. People sometimes assume she isn’t listening and discuss personal things in front of her. But Mel loves a little drama, and will go home and share the gossip with her mom. She wants others to talk directly to her and give her time to respond.
Mel, her family, and I have been in contact for years. She has been excited about this interview for a long time. I'm happy the logistics finally lined up and we were able to meet and do the interview. Thank you for making it possible to provide a platform for Mel to share her story. Your support on Patreon makes it possible to keep telling these important stories. Thank you!
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