Archive for the ‘Parenting’ Category

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Ehlers-Danlos Syndrome? More Claims of “Child Abuse” Emerge

Posted on January 10, 2014

If you have been following the story about the Huber’s being arrested for child abuse you can relate to this new story in North Texas of undiagnosed bone fractures resulting in a criminal or child custody case. by JANET ST. JAMES DALLAS — “Cell phone video is the only way Darlyn Harrell and Adam Bonham can […]

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Teenage Singer is Raising Funds for Ehlers-Danlos

Posted on December 15, 2013

Emilia has been such a blessing for this family. By Tui Benjamin, Reporter A TEENAGE singer-songwriter is hoping to hit the fundraising high notes by joining forces with a youngster battling a rare medical condition. Emilia Ward, aged 17, has the ‘X Factor’ according to Brandlesholme four-year-old Annabelle ‘AJ’ Griffin, who is now the aspiring […]

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Riley Cox, a 9 year old with Ehlers-Danlos, is Going to Disney World

Posted on December 12, 2013

Twelve youngsters from the “Children Exceeding Expectations” School will have their entire families joining them at Disney World!  This Christmas surprise was made possible through the donations of many, and set up through Children Exceeding Expectations program. By: Tony Casey Press Staff Writer “The Christmas surprises kept coming Sunday afternoon at Bristol Motor Speedway for the kids […]

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“Katie Couric Show” features Ehlers-Danlos – See the video!

Posted on December 10, 2013

Ehlers-Danlos Syndrome was discussed on the daytime talk show, Katie. We are providing links to watch the show, and encourage EDSers to add comments to the show’s website.   Watch the entire TV episode Click Here. Visit the interactive ABC TV station website, where you can chime in with your comments: Here are 2 video clips from the Katie […]

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Emily Comber Discusses Her Life With Ehlers-Danlos Syndrome

Posted on December 7, 2013

Emily has learned to deal with the challenges of raising 2 children despite her Ehlers-Danlos Syndrome. By EMMA INNES “A mother has been left devastated by a rare condition that leaves her barely able to cuddle her children. Emily Comber, 31, suffers from a rare syndrome that causes her constant pain and makes her joints ‘pop […]

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Watch Ehlers-Danlos episode on “Good Morning America” – Video Link

Posted on November 29, 2013

“Good Morning America” reported about Ehlers-Danlos on Friday, 11/29/2013. We are providing a link to  Watch the VIDEO of the TV segment. EDS awareness is one positive outcome of the tragic story about the Huber family’s false allegations of child abuse.  Their daughter has been diagnosed with Ehlers-Danlos Syndrome. Click here for this story  about the Huber family’s false allegations […]

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EDS Awareness Speaker Series – Alberto Friedmann – Recording

Posted on November 5, 2013

  We had a special event for our EDS Speaker Series session on November 4, 2013. Our EDS Partners at Arming Champions (Allen and Carolyn Fisher) conducted an interview with Alberto Friedmanncall for them who is a Martial Arts Master with Ehlers-Danlos Syndrome. He also teaches martial arts and self-defense to children and adults with special needs. You can listen […]

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Princess Haley Has Ehlers-Danlos Syndrome and Visits Disney World

Posted on November 3, 2013

  The Dream Factory has a great program for children with disabilities. This will be a special vacation for Haley and her family. By: Judy Harrison, Bangor Daily News NEWPORT — Like many girls her age, Haley Grant loves dressing up as a princess. The 4-year-old has slippers, gowns and crowns she regularly dons when she […]

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