Archive for the ‘Kids’ Category

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11-year-old with Ehlers Danlos Syndrome Needs Accessible Van & Bath

Posted on August 8, 2014

This Ontario community has rallied to help support and raise funds for the Hennessy family. Zoe, 11, has EDS and needs an accessible van to help her travel to appointments with less hazard for herself and her family.  They are closing in on this goal and are also working towards funding a bathroom renovation so that Zoe can be independent […]

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Maddy Parker is Ehlers Danlos Ambassador and “Child of Courage”

Posted on August 1, 2014

We have been tracking 11-year-old Maddy’s exceptional work as she raises Ehlers Danlos awareness in Australia.  By ELISSA DOHERTY. Maddy Parker runs a campaign to raise awareness for the Ehlers Danlos syndrome that both she and her sister suffer from. SHE’S a cotton wool kid whose joints can dislocate by simply picking up a book, but Maddy […]

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Lucy’s Inspirational Video about Ehlers-Danlos Syndrome

Posted on July 20, 2014

We are tracking Lucy’s progress as an advocate for Ehlers Danlos Syndrome awareness in the UK. Lucy and her dog Molly won the “Friends for Life” award at Crufts. Watch her inspiring video which demonstrates her perseverance and positivity as she fights life-threatening symptoms. By Katie Mansfield. INSPIRATIONAL Lucy Watts has made a short film to […]

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Award-winning mom’s photo represents “staying positive” despite Ehlers Danlos Syndrome

Posted on July 9, 2014

 Wendy Pitts is an artist who stays positive while juggling 4 kids,  a business and Ehlers-Danlos Syndrome. INSPIRING residents living with long-term conditions and disabilities have been showing off their works of art after winning a competition to tell their story through a picture. Organised by Warrington CCG, judges from the health board’s quality committee had the difficult […]

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Ehlers-Danlos Mom Makes Tough Decision For Third Child

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 […]

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Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome

Posted on July 5, 2014

 On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane! Skydivers are raising money for a toddler with two serious medical conditions. Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday […]

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Music Therapy Helps 11-year-old Battle Ehlers-Danlos and Chiari Malformation

Posted on July 3, 2014

The OPUS hospital music program helps James cope with Ehlers-Danlos pain. In addition, a recent study showed 29% lower anxiety levels and a lower average breathing rate in patients who were played music during their operations. Click here  to watch videos demonstrating how the OPUS music therapy program is helping patients. By Dan Russell,  Nottingham Post. “MUSIC is helping an 11-year-old boy […]

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180 Guests Enjoy Ball with Annabelle Griffin & Ehlers Danlos Support UK

Posted on June 30, 2014

Annabelle’s charity continues to garner support and raise awareness of Ehlers-Danlos Syndrome (EDS). By Saiqa Chaudhari.   “A GLITTERING ball saw 180 guests raise more than £3,000 for a charity which aims to “make the invisible visible”. Brandlesholme charity Annabelle’s Challenge hosted the glamorous event at The Village Hotel in Bury in aid of national organisation EDS UK. The […]

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