Aly has been fortunate enough to be accepted by the Indiana Canine Assistant Network (ICAN) to be matched with a service dog. Once matched, Aly will need to attend a special two-week training seminar with her “teammate”. We are raising money towards some of the cost of the service dog, and the two weeks in a hotel in Indianapolis for training. Indianapolis is about 2 ½ hours away from our home.
Aly suffers from a rare genetic condition called Ehlers Danlos Syndrome Hypermobility type (EDS). EDS is a connective tissue disorder. Ehlers Danlos Syndrome affects all the connective tissue in the body, primarily the skin, joints, and blood vessel walls. When someone has EDS their collagen is defective, which is essentially is the “glue” that holds you together. This causes Aly painful joint subluxations and dislocations many times a day, and chronic wide spread pain, and painful muscle spasms. The pain level can be so high that she is sobbing even with her medication.
Aly also has a condition called Postural Orthostatic Tachycardia Syndrome (POTS). This is common with EDS. POTS happens because the defective collagen allows everything to become so stretchy, and this allows the blood vessels to stretch and the blood to pool to the lower body leaving the brain, heart, and GI system. The body senses this and goes into a shock like state. This causes low blood pressure, dizziness, rapid heart rate, shakiness, fainting, and heart palpitations.
Her EDS can be very exhausting because of dealing with pain every day. Her balance also suffers because of her joints not staying in place, like they should.
Her POTS also causes great problems with balance. Imagine every time you stand up, things go black, you get a piercing headache, and the room feels as if it’s spinning. This is her everyday life. Her POTS is exasperated by strenuous activities, heat, and if her pain level is very bad. POTS also adds to her fatigue.
Aly sees specialists at Ann & Robert H. Lurie Children’s Hospital in Chicago. She sees specialists in the cardiac department to help manage her POTS. In addition, she sees multiple specialists in the pain management department to help manage her pain from her EDS. She also attends physical therapy to try to strengthen her muscles around her joints in an effort to keep the joints aligned and to try to prevent damage to the joints from them constantly slipping out of place.
Aly does have a wheelchair, and uses it when necessary. As she goes through puberty, which is considered the most painful timeframe for someone with EDS, she has begun to use it more often.
We would like to thank you very much for donating any amount you can spare. We strive to do what’s best for our daughter, and appreciate your kindness more than words can express!
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