In these remarkable videos, you will learn about a 28-year old model who is fierce and powerful in the face of a little-known disease called Ehlers Danlos Syndrome (EDS). She isn't just "someone," she is the beloved long-time partner of my daughter, Bri. And right now Sara and Bri desperately need prayers and financial help.
Sara was born with a rare disease called Ehlers Danlos Syndrome causing lack of collagen in her skin, joints and organs. She recently was diagnosed with Cranial Cervical Instability (CCI) causing severe migraines and putting pressure on her spine cutting off her oxygen flow. It will require life saving surgery only 4 doctors in the world are qualified to perform (all out of network). Sara also has has severe chronic pain throughout her body, nausea and vomiting. EDS is progressively robbing her of her energy and quality of life and Sara has so much to give! There is only one doctor in Minnesota with a specialty in Ehlers-Danlos Syndrome, and that doctor does not accept insurance.
Sara’s condition worsened last winter and she lost the job she loved at the YMCA after her FMLA ran out. She has no income or savings and is in the process of filing for long term disability coverage paying 60% of her salary. It’s a long and arduous process with no guarantees of acceptance. She can’t afford COBRA and is on medical assistance (“Medicaid”) which has many limitations.
Sara has been doing Body Positive Modeling (Instagram @sarageurts
) as an advocate to raise awareness and support of Ehlers-Danlos Syndrome.
My daughter, Bri, has been caring for Sara full-time while doing part-time gigs as a photographer and dealing with her own health issues of anxiety and depression. She would like to seek work but most days Sara is up at 3 am vomiting and needing care off and on throughout the day.
With proper medical care and knowledgeable specialists, we hope Sara will regain the weight she’s lost and have the surgery to stabilize her neck and take the pressure off her spine. Her chronic fatigue syndrome and joint pain will unfortunately not improve and many EDS patients end up in a wheelchair. She was just prescribed firearm crutches. Her hope is to continue to be able to spread awareness about this life threatening and unknown disease.
Please take a look at this inspiring video. We urgently need these funds to seek life changing surgery, out of network care and living expenses post surgery.
Only four neurosurgeons in the world are qualified to perform this surgery and all are out of network and do not accept Medicaid. Your support is desperately needed and would mean the world to us. The costs for surgery and aftercare are $55,000 for the surgeons and at least $120,000 for post-surgery care in Intensive care. Additionally we must raise money for travel and living expenses in Baltimore for Sara to recuperate for at least 6 weeks post surgery ($15,000). This surgery is complex and typically takes 8-10 hours. Additionally Sara’s EDS Specialist is out of network and to cover 2 years of care is $10,000.https://youtu.be/jg_z0wvxMIMSAVE and IMPROVE lives for EDS Sufferers such as Sara:
whatever you can. No donation is too small
on social media (#Sarageurts)
this page https://www.youtube.com/watch?v=xPV52Ip4IOk