Archive for the ‘Parenting’ Category

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Father Raising Awareness with Ryan Challenge and Vascular Ehlers-Danlos Syndrome (VEDS)

Posted on August 27, 2018

  By: Hillary Floren Posted: Aug 14, 2018 06:48 AM MDT EL PASO, Texas – Ryan Dolliver is like most 3-year-old boys.  He loves to play with his sister, laugh, destroy things and he can be mischievous. Ryan has a great smile, and when he laughs it is infectious. He has no clue he is living with […]

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Being different doesn’t mean that you’re alone with EDS

Posted on February 21, 2018

No More Monkey Bars: A 13-Year-Old’s Journey With A Rare Genetic Condition by Isabella ‘Kitty’ Yim An email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote: “Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her […]

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Ian’s Story: A 4-Year-Old Living with EDS

Posted on July 27, 2016

By Taylor Barth   LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed. For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise […]

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Family with Humor and Faith Managing Their Ehlers-Danlos Syndrome

Posted on August 10, 2015

This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]

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Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome

Posted on August 8, 2015

You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card.  Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS.  Her Birthday is August 31st, so get your wishes in the mail!  Address provided below.  __ Watch Jazzy’s story in […]

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Mom with Ehlers-Danlos Syndrome Gets a Grant to Pay for a Scooter

Posted on April 6, 2015

This UK mom is now more mobile!  After receiving a grant for a scooter, she can now spend more quality time with her kids. By Tom Murphy of the Westmorland Gazette. AN EDEN mum-of-two who suffers from a life-changing syndrome is looking forward to regaining her independence after receiving a £500 grant to pay for a […]

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How Can Schools Better Understand Ehlers Danlos Syndrome?

Posted on March 30, 2015

The pressures from the school environment are difficult enough when a student is well.  EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers.   By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]

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