Archive for the ‘Kids with Ehlers-Danlos’ Category
Posted on January 20, 2015
After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]
Posted on January 17, 2015
The local community responds to a hospital fundraiser for Toby and buys him a new wheelchair – just in time for Christmas! A ten-year-old who struggles every day with pain and exhaustion due to a debilitating condition can ‘take his independence back’ thanks to a Christmas boost. Toby Skerman was diagnosed with complex Ehlers-Danlos syndrome […]
Posted on January 13, 2015
Five-year-old Amelia Gibson and her father will be holding a “Father & Daughter Dance” on January 17th to raise awareness and funds for Ehlers Danlos Syndrome. Amelia and her mother are raising EDS Awareness in Indiana hospitals by giving packages containing personal-care items to patients. Amelia and her mother have EDS. Watch the video about their EDS awareness project to help hospital […]
Posted on January 6, 2015
EDS Awareness invites you to watch this FREE webinar recording! Sponsored by: www.bodysupportstore.com Dr. Henry Burkholder presents “Postural Orthostatic Tachycardia Syndrome (POTs) and EDS”. He is a Pediatric Cardiologist and presenter at the 2014 EDNF Conference in Houston, TX. PRESENTER: Dr. Henry Burkholder, Pediatric Cardiologist TOPIC: Postural Orthostatic […]
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 […]
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 […]
Posted on July 7, 2014
Veronica Foale says Ehlers-Danlos Syndrome has not stopped her from having a good quality-of-life. By Fred Hooper. When Veronica Foale was diagnosed with a genetic disorder she was also told there was a 50 per cent chance she would pass this condition on to her children. She already had two children when she found […]
Posted on December 3, 2013
Bethany wants to celebrate Christmas by raising funds for toys at a local hospital. A LITTLE girl with a rare illness is defying her condition and taking on her own Christmas fundraising mission to help other poorly children. Bethany Hambleton, nine, suffers from Ehlers Danlos Type III – a disorder which means she has to […]