Added: 2 years ago
From: ladyesther35
Views: 1,846
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  • What are the symptoms of whatever she may have? I think I might be able to tell wht it is since I do a lot of research on diseases and disorders.

  • Hi I'm Lauren the project coordinator for SWAN UK. We offer information and support to families of children with undiagnosed genetic conditions.

    If you would like to become a member of SWAN UK please come and find us on facebook under 'SWANchildrenUK'

  • wow it's cool 1240 views the most on my videos. :)

  • yes, i think so. it even brings tears to me too. it was a fun project and very personal and meaningful. i look back and wonder how i managed to complete it with everything going on in my world. God must have given me grace to do so.

  • I bet this broght a few tears to some people in your film class

  • I wonder whether Esther has been tested for CDKL5? Some children who have had negative results for Rett Syndrome, Mecp2 and Angleman's have been found to have a CDKL5 mutation. We waited 23 years for a diagnosis for our 3 children who were then diagnosed with CDKL5 related disorders. The severity of their disorders covers the full spectrum. My son had West Syndrome, one twin daughter has the CDKL5 variant of Rett Syndrome and the other has high functioning autism without any history of seizures.

  • HAPPY BIRTHDAY BETHANY!!! Lucky number "7" today! luv Mom

  • Did you ever get the test done for Rett Syndrome?

  • yes, i did from GreenWood Genetics Center and it came back negative.

  • well done. i have a daughter with autism. it was a shock to us, as we didn't see it until she was 3, she is now almost 16 and acts like a 6 year old in many ways. Its never easy, but you have love and support, and thats what counts. bless ya.

  • Thank you Chez1231. Thank you for your kind comments. I know we have a long ways to go and we will face new challenges as Bethany gets bigger. One of them will be bathing her.

    Thank you.

  • Wow Esther, that was so great. Watching a video is so different than seeing pictures and a list of signs and symptoms.

  • Thanks Amy. I put my video on that site you sent me. Feel free to use it on SWAN or FB.

  • This is Esther. I am getting an error on my video. If anyone knows why please tell me.

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