Jenn's Surgery fund

Jennifer Hout is a 40-year-old mother, wife, and woman  battling significant neuromuscusclular issues and diagnosed with numerous health issues related to a rare genetic disorder known as Ehlers-Danlos syndromes (EDS). EDS is a rare genetic disorder that leads to a loss of connective tissue which further results in degenerative collagen and deteriorating joints/tissues. Collagen is the glue that holds the body together in all tissues hence she is slowly coming unglued especially in the cranial and spinal region.  She has also been diagnosed with Chiari Malformation Type 1 and Craniocervical Instability (CCI), which are directly due to EDS.  EDS is a rare genetic disorder that leads to connective tissue disease resulting in degenerative collagen and deteriorating joints/tissues. Chiari is a malformation of the cerebellum that restricts cerebral spinal fluid (CSF) leading to all sorts of neurological problems, such as chronic headache, neck pain, fine motor problems, among numerous others. Craniolcervical instability leads to an unstable cervical vertebra that cannot support the head (think bobble-head) and can also restrict CSF. 

Jennifer is trained as an Occupational Therapist (OT). She truly enjoys advocating for every person, regardless of age, disability, and diagnosis. She especially loves assisting the geriatric population with goals to improve their overall function, safety, and quality of life. It is purely stubbornness and passion that keeps her determined to return to former working self as an Occupational Therapist.

Even with determination comes setbacks. Jennifer’s medical journey has lead her down a long road with many dead ends. She has been misdiagnosed with chronic fatigue, fibromyalgia, migraines, anxiety, and the oh so common “overly stressed”. She has been given countless steroid shots and overprescribed useless medications. However, Jennifer never gave up, persisted, and was determined to know exactly what was medically wrong with her. She was disciplined to learn everything she could about the physical presentation of the conditions described above.

Upon the referral of a specialized neurosurgeon, her DNA was sequenced which positively identified the mutation leading to the diagnosis of EDS (Classical Type). This specialized neurosurgeon confirmed everything – thank you! We are forever indebted to his wisdom and foresight.

Next, Jennifer began searching for  best evidence based practice and BESTcomprehensive surgical team to specifically address all of conditions associated with EDS, Chiari, and CCI. The search led us to Weill Cornell at NYC. On June 19, 2017, Jennifer underwent a posterior fossa laminectomy, occipital to c3 fusion, during a 7 hour operation. Following brain and spinal surgery, Jennifer is recuberating  fairly well overall yet demonstrates deficits with left sided weakness and balance. Currently, she requires home health services for physical therapy in Brooklyn until she is cleared by surgeons and able to return home to Nashville.

Our plan is to return to Nashville on July 2, 2017. Jennifer will continue outpatient physical therapy, to specifically address balance and increase cervical range of motion. In addition to surgical and therapy cost, Jennifer is expected to return for 3-month post-ops to ensure the fusion and laminectomy were successful, Since EDS is progressive disorder, surgeons have cautioned us the instability must go “somewhere” so it is likely Jennifer will require additional surgeries in years to come.

Like so many others, we have a high insurance deductible, in addition to mounting travel costs in order to see true EDS specialists. We are hopeful about Jennifer’s future and are extrexemely thankful for our family and friends’ support during the past year(s). Here’s to Jennifer being independent. having a career again, and, her old fire-cracker-self to fight care for herself and others most in need.

Thank you,
David Hout on behalf of Jennifer Hout EDS Fundraising Committee

Donations

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  • Anonymous 
    • $50 
    • 42 mos
  • Jessica Valencia 
    • $25 
    • 42 mos
  • Anonymous 
    • $50 
    • 42 mos
  • Brian Nelson 
    • $500 
    • 42 mos
  • Anonymous 
    • $100 
    • 42 mos
See all

Organizer

David Hout 
Organizer
Nashville, TN
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