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Hillary's Fight To Get Her Life Back!!
Hillary's Fight To Get Her Life Back!!
For: HILLARY GORSON
Medford, OR
Organizer: Hillary Gorson
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$5,625
of $36,000 goal
19 days left
15% Complete
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The Story
Hello my name is Hillary Gorson, and firstly I would like to thank you for taking the time to read and watch my story. This has been a very difficult thing for me to do and I appreciate all the views and support from you all.
The short story.
I am 22 years old and I suffer from a rare condition called Ehlers-Danlos Syndrome(EDS). This affects all of my joints, my skin, blood vessels, and even internal organs, pretty much my whole body. I get constant subluxatons (partial dislocations) of my wrists, elbows, shoulders, jaw, ankles, knees, spine, and much more. For many years, I’ve been suffering from subluxatons in my neck, especially my C1, C2 vertebrae, the upper two most vertebrae attached to the skull and the rest of my spine, this is called Atlanto-Axial Instabilty (AAI). This has resulted in brain-stem compression, spinal cord compression, and artery compression, causing extreme pain, nerve damage, and many neurological issues. I am confined to a neck brace and wheelchair and have to be under constant care because I am so unstable and cannot walk or do basic activities on my own. I also have two other major spinal conditions that will also require surgery very shortly after this initial fusion. I have Occult Tethered Cord (OTC) and Cranial-Cervical Instabitly (CCI). OTC is kinda like just what is sounds, my spinal cord is being yanked on at the bottom of my spinal and will need to be detethered, this is majorly contributing to why I cannot walk or stand. CCI is instability of my Occipital, which is your skull, so in simple terms my head is slipping off my neck and my neck vertebreas are slipping off of each other and my cord is yanking on all of the instability making it all a lot more worse and complicated.
More on EDS & the Surgery:
Ehlers-Danlos Syndrome affects my connective tissue which makes it very risky and difficult to perform surgery on me. It would be very dangerous for me to pursue having this very complex operation with a surgeon inexperienced in operating on EDS as even our bone is different in EDS, and there are high chances of complications that can arise. There are only a handful of surgeons who know how to safely operate on these upper vertebrae, skull and spinal conditions with Ehlers-Danlos Patients and understand who they all correlate to one another. However these neurosurgeons are across the country on the East Coast and I’m in Oregon. Unfortunatly they will not accept my State Health Insurance. I’ve been fighting with Social Security for over 2 years trying to get Medicare which these surgeons do accept, however my hearings keep getting postponed and I can no longer continue to wait as we have reached a point where none of my doctors feel I can wait another 4-8 months to have this operation. I also will need two more operations on my Skull and Spine as soon after this C1-2 fusion as possible, it’s just the Atlanto Axial Instabilty is currently putting me in life threatening danger and needs to be done ASAP. The Operation is tentatively scheduled for the end of October, if I am able to raise enough for the $10,650 deposit. And that’s not even what the cost of travel, food and a room for my caregivers to stay, that’s an extra few thousand for the at least two week stay.
Here’s Where you come in:
I need to raise enough for the deposit in time to have this surgery as soon as is possible. I cannot wait until Decemeber to find out IF I will be approved for Disability, even if I am approved I cannot travel in winter due to severe damage to my shoulder from my neck and shoulder instability that I cannot wear a sleeve, coat or even bra strap, so traveling in winter is simply not an option as I would freeze, the last three years I simply hibernate in my home and now I haven't left for anything other then a doctors appointment in many months, as being in a vehicle is very dangerous for me with the severe neck instability. One wrong bump or turn and I could have a stroke or become paralyzed! I need to have this vertebrae fused and waiting to have this life saving surgery isn’t an option. The only thing I can do I try to come up with enough for the deposit on this first operation so I can have the surgery by the end of October. The deposit on the other two surgeries are also $10,000 and I will need to have these other operations done as quickly afterwards as possible.
Please consider making a donation that will make this surgery possible, in doing so you will be helping me and my family tremendously. We will be eternally grateful for any size donation we receive.
This fund-raiser is not an organization and is not tax-deductible. This is a gift to me and my family for my medical and travel expenses including at least three trips across the country to see my surgeon. The first for a consultation, the second for the surgery and the third for the post surgical visit, and then again for the other two operations as well.
You can follow My Journey on Facebook and on Blogger:
https://www.facebook.com/hillarygorsonandEDS
http://tallzebrachick.blogspot.com
Where you can find a lot more info on Ehlers-Danlos Syndrome and All that I’ve been experiencing on this Crazy Medical Excursion of Diagnosis to Surgery and recovery to being a healthier more stable me again.
It has come to my attention that youcaring requests a percentage however this is option if you go to the bottom of the donation page select the $ to Youcaring (recommended) there is a drop down and you can select other amount and put in $0. If you wish to bypass this whole process your welcome to send a check payable to me or even using paypal are other options.
Sending Checks...
If you would like to mail a check, you can do so and we will update your donation as an offline donation on the site. So anything you send us will show in the amount raised, unless otherwise stated. Or let me know if you wish your name or donation to remain anonymous. Please email for address if you wish to donate this way
Paypal:
www.paypal.com is also another way to make a donation. You don't even need an account. Just go to the link and click send in the upper drop down and put in my email address and your donation amount. I will list these donations as offline contributions so they may be added to the total or again let me know if you wish to remain anonymous.. My paypal email account is [email protected]
Thank You’s:
I would like to send a thank you card out to everyone that donates.
If you could email your name and address to [email protected]hen I will be sure to get those out as the donations come in.
thank you all for reading and watching my story. Every little bit helps me towards reaching my goal and affording these life saving and altering surgeries.
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Fundraiser Updates (5)
Posted on September 30, 2015 by Hillary Gorson
Thank you all so much we've just received a few checks that have been inputted as offline donations and it has just put the tally over $5,000, halfway to the first deposit on the first surgery! =)
I appreciate all you support so very much. It means so much to have you all pulling for me and helping me to get these important surgeries!
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Posted on September 25, 2015 by Hillary Gorson
Thank you all so much for the overwhelming support, donations and kind messages I have received in just a few days. It really means so much to have you all rallying for me and sharing my video and link. I'm floored by the kindness you've all shown me.
Yesterday I spoke with my neurosurgeon's office and I am confirmed for October 27th at 7:30am for my first surgery, although subject to change at the surgeon's discretion. Things are happening very quickly, This is just 4 weeks away! I am still fighting and writing letters daily to social security, Gov. Brown, Lara Cali OR state Insurance commissioner, Senator Alan Bates and others as well as local and national news organizations to see if there is any way anyone can motivate my judge to move up my disability hearing decision so I may be covered for these important operations before winter. Otherwise I will need to wait until Spring and this is just dangerous with the continued advancement of my neurological symptoms which are sadly increasing daily since my return home from this last visit to follow up on these matters. Everyday i'm a step closer. I am so ready to have all these issues taken care of and your donations and support are getting me there.
"Friends are kisses blown to you by angels"
Thank you all so very much. You are my angels.
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Posted on September 21, 2015 by Hillary Gorson
Since my last update, I've had a lot of decisions to make. but also not really as I only have the one option right now and that is to have my C1-C2 vertebrea fusion and as soon as is possible, which would be as soon as I have the finances to do so.
My Disability hearing was rescheduled for Dec 21st and this is much to far into winter for me to be traveling outside my home, due to the allodynia in my shoulders and that hearing date isn't even when I would know if I was approved, plus I cannot rely on this judge to actually make an approval on my case.
I've taken things a step farther and my family and friends have helped me draft a letter to the Oregon State Governor and Insurance Commissioner to see if they can take a hand in getting me an approval before this late date. I am hoping so much that this is the case as I truly cannot keep waiting to have this surgery.
Everyday things are becoming more difficult and I am just doing everything I can to stay as still as possible so I don't turn over in my chair and keep slipping dangerous vertebrea out further to the point of hitting nerves and arteries.
Thank you for viewing this page and keeping updated as well as sharing my links and donating if you can.
~Hillary
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Posted on September 8, 2015 by Hillary Gorson
So mom and I just got back from the new pain specialist who does prolotherapy and he said he would never do prolo injections up that high when the cranial nerves are being affected with me, and because of my neurological symptoms from my arteries being compromised he said he would defer to what the nuerosurgeons suggest which is a O-C2 fusion and tethered cord release, so I guess prolotherapy is out, and he says forget about my other joints for now. the Priority is on my neck and surgery and getting that taken care of ASAP. He would like to send me to a surgeon in Portland for another evaul to see if he would do the operation but with my insurance and emergantly.
I am all for getting another opinion, however, I do not know this surgeon. I've never heard of him before. The surgeons I went to have a vast experience with working with EDS patients of which we have a higher risk of complications and these surgeons know how to handle them and our lax connective tissue better. I know I need this surgery and soon. However I am very uncomfortable with an inexperienced in EDS neck surgeon fusing my neck especially with my tetherd cord being such and issue too. But also traveling to Portland is actually harder then across the country travel for me, I know that's weird but it is. The tiny plains they use to go upstate are near impossible for me to sit in without knee and hips dislocations, cause when I fly crosscountry I am always in the bulkhead with the extra leg room, Alaska Air which flys to Portland from Medford will not let me sit in the Bulkhead cause it is also the Exit row and i would never survive the drive. The only thing here is Dr. Ross in Portland is more likely to accept my insurance or work with them since none of the top specialists I've seen will accept Medicaid and I would be fine if i already had Medicare however I don't and likely wont till the new year if I get approved for disability. What Dr. Greenburg told me today is he would not be comfortable having me wait 6 months- to a year for surgery at this point and that injections would not be something he would be willing to do for me. =( I am at such a loss for what to do. I really need to raise close to a $100,000 to have just one of these surgeries done out of pocket and I really need to have both and with the specialists I've seen and I need it asap, but I need it done correctly!
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Posted on September 7, 2015 by Hillary Gorson
I've just returned from my follow up with two top neurosurgeons back east in Maryland and New York with whom I discussed my tethered cord syndrome and the need for surgery and they both agreed this should be done and done first. However it will put my neck at greater risk during the surgery if I have not had the fusions first. this is kinda scary. But again I hope prolotherapy will help strengthen this so I am at less risk and more stable.. highley hopeing it could really postpone or replace the need for fusions. I will need to have a few operations otherwise and I would like the smallest number of times going under as possible. Both neurosurgerons had different plans and I was shocked at the drastic difference in how they do the operations and their plan for the same neck instabilities in my case. I learned a lot and have a lot to figure out, but that still comes after I have the Tethered Cord Release. Which is my first surgical priority.
Unfortunately I need to wait to have the tethered cord release operation I so desperately need to have until I can receive have Medicare, and I cannot travel in winter, so while we believe I will get approved when I have my social security disability hearing this December 21st 2015 I will not be able to travel back east for my surgeries until close to May or June 2016. And social security will not move up my hearing any sooner. My Lawyers and I have been working on this. That means nearly another year like this, bedridden with my neck unsupported due to the stretching wearing the collar causes on my back, spinal cord, slippery discs and Filum. The worst thing about having this longer wait is that my neck really needs the support to keep me from further stretching and injuring my arteries and spinal cord. I am already having mini stroke like episodes and I am at stroke risk with the degree of slippage I have in my cervical vertebrates.
In the meantime I am set on trying to raise enough money before winter to make a trip to Florida with my caregivers to see how one round of aggressive Hackett-Hemwall Prolotherapywill work for my neck, left shoulder, knee and hip. The stories in the above link are incredible. This is again an across the country trip to meet with and actually be treated by the top prolotherpist who itrained under the men who invented these kind of treatments and have had great success with severe Ehlers-Danlos Syndrome Patients.
Video's at bottom of this page make me so hopeful and inspiring. http://www.caringmedical.com/prolotherapy-news/prolotherapy-ehlers-danlos-syndrome/
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About the Organizer
Hillary Gorson
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Comments (1)
< Message edited by AQRMZ -- 10/12/2015 7:17:56 PM >
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RE: Strangeness on the Scroll? - 
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), if it was a request from a poster we know... I would at least be look into helping out if I can 
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