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

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 at home. By Meghan Balogh.

A little girl with two rare health disorders is close to meeting her fundraising goal so that she can live an independent life. Zoe Hennessy was diagnosed with not one, but two rare disorders when she was only nine years old. Now at the age of 11, Zoe lives with Ehlers Danlos Syndrome, a rare, incurable genetic disorder of the connective tissues. It can affect skin, bones, tendons, muscles, cartilage and organs. For her, it means a life with limited mobility, often in a wheelchair when she is healing from sprains and injuries. She also lives with Complex Regional Pain Syndrome (CRPS), a chronic pain condition that is caused by a malfunction in the nervous system. But despite the difficulties she faces, Zoe continues to live a relatively normal life thanks to the hard work of her parents. Mom Heather quit her job two years ago to take care of her daughter. Since then she has been working hard to facilitate all of Zoe’s medical appointments, school, and everyday quality-of-life despite lacking some of the tools that would make Zoe’s life less complicated. One of those much-needed tools is an accessible van for Zoe. “Zoe averages two full appointments and therapy days per week, without the myriad of specialist appointments, emergency room visits, and trips to Sick Kids,” explained Heather Hennessy, Zoe’s mom. “Lifting her in and out of our current vehicle risks injury to her, and us, every time we do it as her joints dislocate and subluxate easily and she is close to 100 lbs. now.” Zoe rides in the middle of the back seat of their car with her right leg, which is stuck in extension, extended between the driver and front passenger seats, resting on the console. “Her foot is getting too close to the gear shift, causing safety concerns for everyone in the vehicle,” said Hennessy. With the help of the community, which has rallied to help support and raise funds for the Hennessys, the family has raised $34,000 towards the cost of a $40,000 accessible van, which will allow Zoe to travel to appointments with less hazard for herself and her family than her current arrangement. The Hennessy family is having a garage sale at their home on Saturday, July 19 at 1276 and 1277 Pine Grove Road, just outside of Roblin, from 9 a.m. to 4 p.m. to help raise some funds. Shellie Bender, a friend, is also helping to fundraise for Zoe for a bathroom renovation and a ramp, so that Zoe can be independent at home. “I am helping organize a bathroom renovation by donations to make Zoe’s life a little more independent,” wrote Bender in a statement to the paper. “We are almost there, with stuff from some amazing businesses and people, but we are still lacking things like a high toilet, a shower head, a pedestal sink, etcetera. We are also going to build a ramp out back off the deck for her to be able to get to the back yard, where her family has camp fires and likes to hang out in the summer. We still require all the lumber needed to do this for Zoe.” Bender is hoping that people will step forward and help the family acquire some of these materials to complete the projects.

To donate to their cause, Click here for the online IndieGoGo campaign Click here for the original source of this article We appreciate your Likes and Comments To get in touch with Shellie Bender about donating materials or services, contact 613-379-2514 or benders2010@live.com.