Medical Journey

Help Jackie with her medical journey and Service Dog!

Jackie has been affected by Ehlers-Danlos Syndrome, Chiari  and repeated cerebral spinal fluid leaks. 

Due to Jackie's onoging medical symptoms, she was approved for a service dog through ECAD , Educated Canines Assisting with Disabilities. ECAD is located in Torrington, CT and trains golden retrievers to assist those with disabilities with daily activities, like retrieving items, alerting for help, getting help and providing stability.  Jackie visited ECAD last week, and in that short visit, her optimism for an independent future and college experience was renewed.   The cost of a Service Dog ($25,000) along with Jackie's regular medical bills, after insurance,  ($10000) is overwhelming, and we are once again, and humbly, asking for community help.

To assist in the placement of a service dog forJackie, you can make donations directly to ECAD in Jackie Stager's name.
https://ecad1.org/index.php/sponsor-support 

Jackie's Medical Journey

EDS is a connective tissue disorder which causes widespread dysfunction throughout the body. Jackie's symptoms began when she was little with joint pain, headaches and nausea.  It took several years to get a proper diagnosis and further testing to find the extent of her comorbid conditions. In Novemember of 2014, Jackie passed out during a play rehearsal. This episode was followed by multiple trips to the ER for low heart rate, blood pressure, dizziness, fatigue and headaches. She became incapacitated due to these symptoms. No matter what we tried, her symptoms remained. She stopped going to school, she stopped singing with her chorus, she stopped reading and writing, she stayed home and didn't want to have visitors or go anywhere. She rested and went to doctor's appointments. She became wheelchair bound, even in the house. Everything changed almost overnight, and we were facing a "new normal".  Those who know Jackie, know her to be fun, smart, talented and outgoing. She is still all of these things, but is often too tired or in too much pain to express them. 

We knew that something was really wrong when her symptoms just lingered with no improvement. In 2015, Jackie was diagnosed with Chiari 1 Malformation,  a brain deformity in which the lowest part of the cerebellum slips through the opening in the skull. This puts pressure on the brain stem and sensitive nerves, which left Jackie with multiple,  intermittent symptoms such as difficulty breathing, swallowing,  and speaking, headaches, constant dizziness, severe fatigue, and muscle weakness. She was also diagnosed with postural orthostatic tachycardia syndrome (POTS) and Gastroparesis, both a sign of autonomic nervous system dysfunction (dysautonomia).

Later the same year, nine months after her initial symptoms appeared, she was diagnosed with a cerebral spinal fluid leak, another co-morbid condition that affects many with connective tissue disorders. It is beleived that the onset of symptoms in October of 2014, was the result of a CSF leak caused by a roller coaster ride and was the primary injury that caused her severe symptoms. She was treated for the leak at Cedars-Sinai Hospital in CA, which improved her daily living by about 80%, for about one year.  She was able to return to school, walk without assistance, and enjoy time with her friends.

In October of 2016, about one year after her first CSF leak repair, her symptoms returned. She was still able to get to school, but her fatigue, dizziness, and headaches prevented her from having a normal social life or enjoying day-to-day activities. Last month, Jackie, again, received treatment for another leak. The repair is a painful ordeal. She is still recovering and we are waiting to see if the treatment worked.  The Dr's believe that this may be a recurring, lifetime, chronic condition that will need ongoing, diligent treatment or invasive and dangerous surgery, which we strongly hope to avoid.

In addition, EDS has affected multiple members of Jackie's family and ongoing medical tests and procedures for the rest of us,  keep us busy.

Jackie has been incredibly resolved and resiliant throughout all the bloodwork, tests, doctor's appointments, MRI's and uncertainty. Her inner stregnth and optimism, along with her practical nature, have been an anchor for the rest of us.  

Please help us continue to help Jackie. There is a long, uncertain road ahead, but we are ever optomistic and won't give up!  Thank You for reading!

Eloise, Mike & Jackie