Archive for the ‘Kids’ Category

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4th Grade Ehlers Danlos Student Receives Statewide Award

Posted on January 5, 2015

Dominic McMinn was chosen for this year’s “Every Student Succeeding” award and scholarship in California. An Ehlers Danlos student in the Accelerated Reading Program, he’s not only excelled academically, but overcome great physical hurdles.  He is also the the youngest award recipient. Congratulations on your accomplishments, Dominic! Submitted to the Appeal-Democrat.   “Dominic was named this year’s Region […]

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8 Year Old Forest Ranger with Ehlers Danlos Syndrome on TV

Posted on December 15, 2014

Watch this video about a boy with Ehlers Danlos Syndrome whose dream came true! “Eight-year-old Gabriel was officially named an honorary ranger at Yosemite National Park. Gabriel Lavan-Ying, from Gainesville, Florida, has Ehlers-Danlos syndrome, a debilitating and incurable disorder affecting that causes overly flexible joints and effects the skin and blood vessels. But when the Make-A-Wish Foundation […]

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Firefighters in UK Raise Money for Ehlers Danlos Syndrome

Posted on November 28, 2014

Five-year-old Annabelle Griffin inspired local firefighters to perform physical feats — raising money and Ehlers Danlos Syndrome awareness in the UK. Annabelle has VEDS. FIREFIGHTERS pushed themselves to the limit scaling the UK’s three highest peaks and cycling 500 miles to raise a staggering £15,000 for charity. The group of eight men from Oldham Fire Station […]

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5-year-old NC Boy Avoids Bumps Due to Vascular Ehlers Danlos Syndrome

Posted on November 14, 2014

 This is a very touching story about 5-year-old Matthew’s struggle to understand his Type IV Ehlers Danlos Syndrome. “It’s really sad to say my wife knows more about it than the doctors,” says his father, Joshua, who was diagnosed last year. At 33 years old, he finally discovered the reason for his multiple vascular ruptures. His son is […]

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Maddison Parker Meets with Australia’s Prime Minister to Discuss Ehlers Danlos Syndrome

Posted on October 13, 2014

Maddison is at it again!  This ambitious 11-year-old had a successful meeting with Australia’s Prime Minister! She asked for five minutes and got 30! She feels she got her message across and that it will yield positive results in promoting EDS Awareness and a possible EDS clinic in Australia. PRIME Minister Tony Abbott will fly the flag for Ehlers Danlos […]

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Nine-year-old with Ehlers Danlos Syndrome goes to Disney World

Posted on October 3, 2014

Nine-year-old Elisabeth O’Brien will go to Disney World with “Kidd’s Kids” and celebrate a “a big awareness day” for Ehlers Danlos Syndrome. BY STEVE PALISIN. “A 9-year-old “Kidd’s Kid” from Socastee and her family are going to Walt Disney World in November, thanks to the generosity of a morning radio show’s listeners on the Grand Strand and nationwide. […]

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Proper Diagnosis Helps Family Deal with Ehlers Danlos Syndrome

Posted on October 2, 2014

Diagnosis is the first step in treatment of Ehlers Danlos Syndrome.  Yet, 95% of sufferers remain undiagnosed*. 50 percent of patients waited more than 20 years to receive a proper diagnosis, according to the EDSawareness.com poll. “Charlie Howram can dislocate a finger just by pulling up his socks – but, until he was four, the fact […]

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Mother-Daughter Duo Use Ehlers Danlos Syndrome to Give Back

Posted on September 23, 2014

By Alia Blackburn. Five-year-old Amelia and her mother are raising EDS Awareness in hospitals.  They give packages containing personal-care items to help hospital patients, and use the opportunity to share about Ehlers-Danlos Syndrome.   CLICK THE PICTURE TO WATCH THE VIDEO. Looking at Brandy Gibson and her 5-year-old daughter, Amelia, you will notice the bond they share is inevitable. […]

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