Save Sara EDS/CCI (Craniocervical Instability)

Sara is my daughter Bri’s 29-year-old long-time partner and 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 Craniocervical Instability (CCI) causing her head to slowly sink into her spine because her ligaments are not structurally sound to hold her head up cutting off oxygen flow and requiring surgery. She was also diagnosed with Epilepsy and POTS in 2019 and has been hospitalized 4 times with gran Mal seizures. She experiences severe migraines on a daily basis, dizziness and fainting, nausea and vomiting, severe chronic pain and fatigue throughout her body and now seizures. Her multiple conditions will require life saving Cervical Spinal Fusion surgery not covered by Medicaid. Her medical conditions are progressively robbing her of her energy and quality of life and Sara has so much to give. 

Sara’s condition worsened in early 2019 and she lost the job she loved at the YMCA after her FMLA ran out. She has no savings and is on medical assistance (“Medicaid”) which has many limitations.

Update: 7/16/2020:  To further complicate things Sara and Bri were brutally assaulted outside of their apartment in The Phillips neighborhood of Minneapolis on 7/16 by a group of strangers for no apparent reason. They both sustained multiple injuries including concussions, cracked ribs, dislocated ribs, and the emotional trauma of the attacks. At least one of the attackers shares their parking lot forcing them to move on short notice and break their lease. Unfortunately no one witnessed the entire attack and no arrests have been made.

Sara has been doing Body Positive Modeling (Instagram @sarageurts) as an advocate to raise awareness and support of Ehlers-Danlos Syndrome and her story is captured in the video links. My daughter, Bri, has been caring for Sara full-time while seeking part-time gigs as a photographer and dealing with her own health issues of anxiety and depression. 

Sara’s hopes were dashed when, after 7 months of waiting, her appointment with one of the four US neurosurgeons was cancelled the day before her appointment because he doesn’t accept Medicaid. We found out none of the US neurosurgeons accept Medicaid and legally can’t accept a cash payment from a Medicaid recipient. She can’t get on private insurance so she has two choices: 1) go out of country to see Dr Gilete in Barcelona, or, 2) drop Medicaid and see a US neurosurgeon. Either way, Her care would be entirely out of pocket and costs are expected to be between $100-$200,000. Your support is desperately needed and would mean the world to us. Please join Sara, Bri and their families to provide financial support and living expenses for Sara’s care. The US health system has many gaps that make it difficult or impossible to get out of network care.

With proper medical care and knowledgeable specialists, we hope Sara will be able to have the surgery to stabilize her neck and take the pressure off her spine. Her epilepsy, chronic fatigue syndrome and joint pain will unfortunately not improve. Her hope is to continue to be able to spread awareness about this life threatening and unknown disease and eventually start a non-profit to help others with this condition.

Please take a look at these inspiring mini (5 min) documentaries produced by Barcroft TV that tell Sara's story:
https://youtu.be/jg_z0wvxMIM

https://www.youtube.com/watch?v=xPV52Ip4IOk

Our hope is to raise awareness and IMPROVE lives for EDS Sufferers such as Sara:
1) GIVE whatever you can. No donation is too small
2) SHARE on social media (#Sarageurts)
3) EMAIL this page

Asking for support is never easy but neither is providing it during these most difficult times. We are extremely grateful to YOU for taking the time to read Sara’s story. Whether you can help financially or not your love and care is deeply appreciated. Please feel free to share Sara’s story.