The Story of Guiding_Kenedi
322
Published 2022-02-01
All Comments (5)
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I got here from Facebook, I think?😄 I'll have to go look for TikTok. Loving her singing💕
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Followed from tiktok, my granddaughter was born with senior loken syndrome. She has some light perception. But we are waiting for her to start talking to let us know how much. You 2 are an inspiration to alot of us. Please keep doing what you are doing!
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I ate such a great mom and advocate
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Thank you so much for sharing your story. My baby was diagnosed with bilateral ONH via an MRI at 11 days old. We were originally told she has an absent optic chiasm and would be completely blind but now at almost 4 months old we are waiting for further tests to see if she has any vision at all as she seems to react to light. Your TikTok videos have been such a comfort and inspiration for our whole family and have helped us come to terms with this new world we have found ourselves in.
