Help for Mandy

Just over a year ago, my niece, Mandy, who is 20 years old, was diagnosed with Ehlers-Danlos Syndrome, stage 3. EDS is a genetic disorder that does not allow the body to produce needed collagen. Collagen occurs throughout the body, including the skin, gut, lungs, joints, blood vessels, bladder, bowel and pelvic organs. It is a major structural protein, forming molecular cables that strengthen the tendons, the skin and internal organs. It should provide structure to our bodies, protecting and supporting the softer tissues and connecting them with the skeleton.  To learn more about EDS and the symptoms, you can go the following website: http://www.edhs.info/understanding-eds-h.

With this disorder, Mandy has severe/debilitating pain throughout her entire body - muscles, joints, nerves, skin, gastrointestinal, etc. Because her body does not produce the required collagen, her knees, hips and ankles are frequently dislocated (even by just walking across a room). She has leg braces and a wheelchair which help to a certain extent.

To complicate matters, Mandy has POTS which basically means that every time she stands up, her heart rate shoots up and her blood pressure bottoms out which causes her to almost pass out. There is a clinic (POTScare.com) that treats POTS. If we can get the POTS under control, then she will be able to start doing the exercises and other treatments in order to get the EDS under control.

Mandy has been able to receive very little help from local doctors as very few doctors have ever heard anything about EDS. It took over a year to receive adiagnosis (she had to go across the state to receive the diagnosis) and many doctors just told her it was all in her head. There is no cure for EDS, but the symptoms can be treated.

Mandy has been accepted at the POTScare clinic (POTScare.com) in Colleyville, TX. Her appointment is 12/5. We need to find the money both for the clinic and the trip and time off for Norm (her father) to take her. (About $10,000.) Her family is also looking for a small motorhome for the trip so that Mandy can lie down (she is unable to sit for extended periods of time), and where they can cook her special diet and not have worry about cross contamination (she is highly allergic to gluten).
 
Would you consider helping Mandy get to Texas for this treatment. Mandy and her family are very discouraged at this point because none of the treatments they have tried have helped (in several cases, the treatments have made her symptoms worse). We are praying that she will get relief through this program. Her entire family would greatly appreciate any help you can give.