Archive for the ‘Kids with Ehlers-Danlos’ Category

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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Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome

Posted on July 31, 2015

By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome.  His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening.  Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]

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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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Single Mom Dealing with Ehlers-Danlos Syndrome

Posted on March 20, 2015

Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks.  But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life. By: Margaret Burin  (ABC […]

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Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome

Posted on February 7, 2015

In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT.  Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her! By Kathleen Schassler, The […]

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Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome

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 […]

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10 year old Toby with Ehlers-Danlos Syndrome Regains Independence

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 […]

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