Our Auntie, Emily Kennedy, is a 37 year old woman who was diagnosed 8 years ago with a nontraditional form of Chronic Regional Pain Syndrome (CRPS), also known as Reflex Sympathetis Dystrophy (RSD). CRPS is a rare progressive disease of the nervous system. In most cases it presents in the extremities. However, Auntie Em's CRPS originated in her chest and has spread to include her entire trunk area (front and back) and her arms and is now moving into her neck and jaw. This disease causes her to feel excruiating pain and pressure and causes her to be immoble most of the time. She is unable to accomplish basic tasks that all of us take for granted such as driving, cooking, reading a book, visiting friends and family, traveling, etc. The doctors have determined that she is permanantly disabled and is unable to participate in her life as she used to.
Why We Need Your Help
Eight years ago, Auntie Em was a healthy successful Visual Merchandizer for a major retail company. She loved her work and excelled in her chosen profession. Auntie Em was injured at work and she has had to deal with the many difficulties that come with the Workers Compensation process. She was not provided adequate and timely medical care at the onset of her symptoms. She is constantly in pain, her treatment plan is not providing relief and there are currently no new treatment options. She has even consulted with a doctor at the Cleveland Clinic who says that he can do nothing to help. The only time that the pressure is relieved a bit is when she is submerged in water. The bouyancy of the water reduces the force of gravity on her body. Workers Compensation will no longer pay for any type of aquatic therapy. Auntie Em has just been told she is prediabetic and should be excercising which is impossible in her condition now. The doctors have warned her that she may end up with frozen shoulders due to inactivity. Even if we paid for aquatic therapy out of pocket, Auntie Em's CRPS makes riding in a car unbearable and the trip to and from the aquatic center cancels out the benefits. Any recreational center with a pool does not have private time slots and Auntie Em has to be in the pool by herself because the motions of others in the water causes her more pain.
What We Need
We would like to help Autie Em put an aquatic therapy pool in her home so she will be able to use it on a daily basis . This would provide Auntie Em some minor relief from pressure and allow her to walk in the pool for aquatic exercise when she is able. Although Auntie Em will always have this degenerative disease, we hope this will help to improve her quality of life. The total project costs $79,000. Auntie Em, her husband and our other family members have raised $31,000. We need your help to come up with the additional $48,000. Thank you for your support!
Learn more about CRPS/RSD:
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- Megan Jordan Tocha
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- Jen Buckley
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