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Save Sara (Ehlers Danlos Syndrome and CCI)

$5,440 of $50,000 goal

Raised by 152 people in 3 months
Created April 12, 2019
Sara's Supporters
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 likely 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 has applied for medical assistance. The wait for a section 8 housing voucher is eight years or more and she’s not even on the list yet. There is no social welfare plan that provides assistance for daily living expenses. She is totally dependent on the charity of family and friends. Disability due to a medical condition is the number one cause of homelessness.

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. 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 treatment and living expenses for Sara.

https://youtu.be/jg_z0wvxMIM

SAVE and IMPROVE lives for EDS Sufferers such as Sara:
1) GIVE whatever you can. No donation is too small and 10% of the proceeds of this campaign will be donated to the Ehler’s Danlos Society
2) SHARE on social media (#Sarageurts)
3) EMAIL this page

https://www.youtube.com/watch?v=xPV52Ip4IOk
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Thanks so much to all of our wonderful donors and especially to our newest donors who saw Sara’s story on Snap Chat. You guys are all amazing and we greatly appreciate your generosity!

Sara continues to have gastro issues, nausea, vomiting and loss of appetite. The good news is that it doesn’t appear to be Gastroparesis. The bad news is trying to
Figure out the cause. The doctor thinks it could be caused by something called MALS which would require a minimal surgery. More tests to come....

The bigger issue is her CCI - Cranial Cervical Instability which the doctor said will require a very lengthy and expensive spinal fusion that only four neurosurgeons in the world have safely and competently performed on Ehlers Danlos patients. They are all out of network. Because of this situation and hearing rumors of costs of $150K plus travel, for now I reset the goal to $50K until we get more specifics.

Despite these obstacles Sara is striving to stay positive and spread awareness through social media about EDS.
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Thanks again to all of you who give us so much hope! Please continue to share the fundraiser as the needs have only grown larger and the last donation was 10 days ago. The money has been spent on specialist appointments, co-pays, medicine and medical devices such as the neck brace and knee and ankle braces.

It’s been a rough few weeks since the last update. Sara’s nausea and vomiting have continued and the migraines as well. The financial situation is dire as Sara has no income and is in limbo while we go through the application process for long term disability. Bri continues to care for Sara and it’s hard to leave her. She’s thinking of getting her PCA certification or CNA. She is seeking work with flexible hours. I’ve been calling the disability hub and checking into resources but there are none except possibly medical assistance and food stamps. Section 8 vouchers for rental assistance are impossible to get and even when they open up the waiting list again it can take decades. There is a huge shortage of affordable housing for people who are disabled or living in poverty. It gives me a whole new appreciation for people in that situation.

Sara will be going through a 4 hour stomach motility test to check for Gastroparesis at Regions Hospital next week.
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Thanks to everyone for their generous
Support. Your support means the world to Sara!

Sara has had some setbacks. In addition to to Nausea and Vomiting she’s developed bad migraines, likely caused by the cervical instability. Medical marijuana helps done but it’s incredibly expensive at the doses Sara needs for pain relief, roughly $300 every 6 days and it’s not covered by insurance.

Medica turned down her appeal to cover her EDS Specialist. Not sure what next steps are but will try to push it further.

She saw the Gastroenterologist today and he seems like a great doctor. She needs an Endoscopy to be done under General Anesthesia and the earliest appointment is November! That’s a long time to wait for answers. She also needs a stomach emptying study to test for Gastroparesis. After the appointment we went out to lunch and Sara couldn’t even keep down a few bites of toast. Bri and I feel so bad her her.

Sara was terminated from her job because her FMLA time is gone. She’s in limbo financially as there are no certainties she’ll be approved for disability pay despite the seriousness of her symptoms. She doesn’t qualify for unemployment and the county rejected her for emergency assistance because she hasn’t received an eviction notice yet. Losing her job that she’d been doing for almost 4 years and for the first time in her life being unemployed has been a tough transition.

Sorry to be a downer but the reality of this disease is that it totally sucks. The medical community and insurance companies don’t understand it. To get anything done we have to fight for it. It helps knowing that every battle we win is a battle for Ehlers Danlos Syndrome and for others who have it. On the bright side, we just donated another $300 to the Ehlers Danlos Society.
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https://people.com/health/model-rare-ehlers-danlos-skin-condition-bedridden-health-complications/

Thanks from the bottom of our hearts for all of your generous support! People magazine picked up on the Barcroft video. We are so grateful for the exposure and also the beautiful magazine, Herring&Herring, that Sara was featured in posted the fundraiser on their Instagram! So grateful for the shares and donations!

Sara’s is not doing well at this time. She has been experiencing migraines along with continued nausea, vomiting and pain throughout her body that is difficult to control. She will be consulting with Dr. Dorff again on how to best manage the pain without the use of Opioids. She has medical marijuana and CBD oil and it helps with nausea but effects on pain are not long lasting. Next week she will see a Gastroenterologist. Please keep praying for Sara. Bri has been her devoted caregiver and needs your prayers too as they adjust to this new normal.
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$5,440 of $50,000 goal

Raised by 152 people in 3 months
Created April 12, 2019
Sara's Supporters
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