UNDIAGNOSED by Esther Bautista

This is my first documentary. I had to edit it quite a bit to fit the 10 minutes time frame. This is about my Daughter Bethany who is a child with an undiagnosed disability. There was so much more I could have put into this but I did it for my film class and it had to be under 15 minutes. I hope it brings awareness to the fact that many children and adults are currently undiagnosed in the world today.
If you like this support it by going to this website and voting for it again.
http://extraordinarymeasuresthemovie.com/#/quilt

Category:

Education

Tags:

• angelman
• syndrome
• retts
• undiagnosed
• child
• disability

[ladyesther35]

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



[ladyesther35]

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.

[ladyesther35]

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

[chez1231]

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.

[ladyesther35]

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.

[SWANusa]

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

[ladyesther35]

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

[reidrules45]

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.

[SWANchildrenUK]

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'

[RemedyMD]

Thank you for this video. We too are trying to help researchers find cures for these rare diseases. For rare disease day and In conjunction with the Children's Rare Disease Network RemedyMD is giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the organization of their choice. Visit RemedyMD's website and click on the "About" section to read about this partnership and for more details.



[Mousegirl913]

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

[aussieangelsmum]

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.

[poeticpaul]

Hi I found you on facebook, page of the project charity i'ts now the eve of World Genes Day I promoted you on my page and a Doctor got in tough asking how to find you, He want's to help. Please post on Nicole Boice's facebook page how people can assist you.

Paul