Save Brave Belinda

For: Belinda Harrington
Woodstock, GA
Organizer: Chelsea Shelton
Save Brave Belinda (Belinda Harrington)
of $82,810 goal.
Raised by 182 donors
38% Complete

The Story

My dear sister Belinda desperately needs your help to regain her life, prevent paralysis and end her horrific suffering. She is the Mother to 3 beautiful children and has a devoted husband who all love her and need her. Please prayerfully consider donating so that she can afford Part #2 of her life saving surgery (her 4th, out of network & out of state, Major Chiari/EDS related surgery) on 9/22/16. She is actively recovering from Part #1 of her life saving surgery (her 3rd, out of network & out of state, Major Chiari/EDS Brain, Skull & Spine Surgery)  thanks to the beautiful giving hearts who have come together to help save her life and stop her Brain Stem compression. We give great thanks to God and are forever grateful for all of you! But, She desperately needs this next surgery.

"I feel so very blessed to have found a World Renowned Specialist for this rare condition willing to help me after 5 long years of praying for God's Will. I pray that God may speak to the hearts and minds of all those who come to this page, that you may feel led to help end my horrific and unbearable suffering through helping to fund my upcoming surgery on 9/22/16 by making whatever size donation God places on your heart. I long to live life outside of unbearable pain and become the Mother, Wife, Sister and Daughter my Family and I have yearned for over 5 years. I am forever grateful for any help." - Note from Belinda 

Over 5 years ago, my sister Belinda was on top of the world. She was newly married, the happiest she had ever been, when an undiagnosed birth defect suddenly became fully symptomatic. This serious Neurological Disorder is known as Chiari Malformation. In a matter of months, she had lost the career she loved, the ability to care for herself and was being pushed by her kids in a wheelchair.

After 2 costly invasive brain surgeries and a year fighting off deadly infections, we thought Belinda had won her battle until even more severe and debilitating neurological symptoms occurred, her pain increased to unbearable heights and she found herself bedridden again.

It turned out that Belinda was suffering from a dangerous complication of Chiari Malformation and Ehlers-Danlos Syndrome (EDS) known as CranioCervical Instability (CCI). This means that every time Belinda moved, her Brain Stem was being squished by her skull. The Brain Stem plays a vital part in keeping us alive. It regulates our blood pressure, tells our heart to beat, our body to breathe and handles every important function that our body does automatically. Without surgical intervention, the probable prognosis was paralysis, organ failure, feeding tubes and death. Belinda is so grateful to have completed this part of the surgery, but she now has to have the second surgery and has a very long and intense recovery ahead of her. Belinda's entire Cervical spine needs to be stabilized and fused from the bottom level of the CranioCervical Fusion to the start of the Thoracic Spine. Not doing so would leave Belinda still facing the probable prognosis of paralysis, a life in a wheelchair, bowel/urinary incontinence, a 24/7 caregiver or family to change diapers and care for her for the rest of her life, a lifetime of the pain she has suffered through so greatly praying for God's help in taking away.  

Belinda is suffering greatly and every day becomes harder for her to push through. She deals with constant burning nerve pain and chronic stabbing pains in her neck. She has already developed permanent neurological damage, cortical blindness, neurogenic bladder dysfunction, P.O.T.S., weakness & loss of fine motor skills, mobility issues in her right arm and unbearable nerve pain throughout her upper body stemming from her compressed spinal cord and nerve roots sending "fire-like" painfully - burning pain down her spine, ribs, across her shoulder blades and down to her fingertips. 

Belinda spent 3 years of being tossed from doctor to doctor and undergoing tests and procedures that were not only ineffective, but harmful to someone with Chiari, EDS and CCI causing her issues to escalate and progress quickly. This is due to lack of knowledge about Chiari Malformation and Ehlers Danlos Syndrome in the medical field. The local doctors simply do not have the skills necessary to save her life. In fact, there are very few Specialists in the World capable or even willing to help those with Belinda's condition. Her surgeon is sought out world-wide, has performed over 600 of the special CranioCervical Fusion's Belinda requires and he is located in NY. He also has the expertise to perform the 2nd Cervical Fusion she needs as her spinal cord & nerve roots are being compressed causing horrific neurological issues and pain. (This requires a special technique given her EDS or faulty connective tissues.) As with most Chiari/EDS Specialists, this Neurosurgeon is out of network for her insurance. This is typical and usually due to the complexity of the surgeries involved which need no restrictions.

I'm coming to you now with a plea, please prayerfully consider donating to restore my sister's life. Belinda is the most giving person I know, constantly helping others even when she doesn't feel well herself. In these 5 years of the most unimaginable suffering, Belinda has never once faltered in her faith, trusting the good Lord to bring her through. Please help turn my sister's amazing patience in this long TEST into a beautiful TESTimony. No amount is too small. We are grateful for any amount you can provide. God Bless You!
~ Chelsea (Belinda's Sister)

::: Update ::: --- As soon as Belinda is feeling up to it, she will provide an update for us. Recovery has been extremely tough for her. Belinda raised enough to cover the travel expenses for part #1 of this invasive surgery. Belinda highly underestimated how hard and painful this 1st brain, skull and spine surgery would be. She spent 4 days in ICU before receiving a step down room and had to fly home less than 18 hours from being discharged. So, she is praying hard that God would cover the funds to stay a few additional days as to make a smooth, easier transition.

A Note About Expenses and Fundraising: ~from: Belinda 

There is nothing I hate more than having to put myself out there and ask for help. I have been unable to work and my husband was laid off by his company during my first brain surgery. Staying afloat hasn't been easy. We have come close to losing our home, but have been blessed by Jesus' Hands. We have a lot of debt and are behind - but God is good and my trust is in Him. I have placed hardships and requested financial aid anywhere we can, but I am still paying on a lot of Radiology Tests, PICC lines, etc... from last year's emergency 2nd brain surgery and many, many more bills and testing for this year. This will be my 3rd and 4th "out of network" Chiari/EDS Surgery. We have 4 children in our household, 3 with Ehlers Danlos Syndrome and 2 with Chiari Malformation Zero. Between the 4 of us who are sick, most of our time is spent at doctor appointments and physical therapy which is costly.  
We are so blessed in that the Hospital for these surgeries appear to be covered by my insurance; however, there are many other expenses involved in making this happen. These are estimates and I am combining both surgeries as these will be happening quickly and I am in desperate need for them to happen immediately. I can hardly bare this pain another day longer and living in a bed is no way to live. 

I will lower/raise the goal of the fundraiser based upon exact costs as I know them.

8/1/2016: We highly underestimated the cost of a trip to NY. We need to hit at least $20,400 to make this next trip possible. 

2 Surgeries (1st = more expensive, 2nd the trip = more expensive)
Medical: $1349.16 (In Network Deductible towards Hospital, Medical Clearance with PCP, Lab Work & Physical, Cervical Collar, Physical Therapy, Prescriptions) 
Videoconferencing with MD: $600
Traveling Expenses: $Underestimated - will Revise (12 days in New York for Surgery #1, 15 days in New York for Surgery #2, Hotel*, Flights*, Transportation/Taxis or Rental Car*, Food, etc...)
: $Underestimated - Will Revise (I've been asked by my surgeon to bring someone with me for both trips and it will impact our household greatly.)
Out of Pocket Surgeon Fees: $55,328 ($6,000 out of network deductible plus estimated fee surgery 1, deductible met for surgery 2. Could be way more as Surgery #1 alone costs approximately $300,000 due to the complexities involved with Ehlers Danlos Syndrome). 
MISC: Current PT, Loss of Salary for Post-op Help x 2 surgeries, Post-op PT, Follow Up Appts & Travel x 2 Surgeries. Child Care, Traveling Fees, Hotels, Transportation, MRI/CT Testing prior to surgery 2 and at follow up, Meeting Deductible again for follow up, Out of Network Cost etc... est. $15,200 (could be more)

Other: $6,534.39 - This is currently what I owe in Medical Bills. I am not including this amount in the Fundraiser total, however, if the fundraiser reaches goal - any additional funds will be used to relieve the stress of this debt.

Amazon Wish list (linked directly to Belinda's Shipping Address):
More Info:
PayPal: [email protected]
Cards, Gift Cards and Checks:
PO Box 2184
Woodstock, GA 30188

Fundraiser Updates

Posted on September 15, 2017

Posted on September 15, 2017

Dear Sweet Friends and Family,

I'm going to pre-warn you about my grammar, any use of wrong words that sound similar to the right word, spelling, anything that doesn't make sense, etc... I ask for your continued prayers as I've been dealing with very noticeable worsening Cognitive Dysfunction, Memory Impairment, Inability to Gather my Thoughts, Staying on Track, Remembering what I was trying to say/do and issues with completing/handling Cognitive Tasks (especially verbal and those involving phone calls). In an attempt to explain what's happening a little clearer: My level of intelligence hasn't changed at all, but the way my Brain is processing and operating has been very challenging and difficult since my Adrenal Failure. I'm trying to adapt, figure out how to best organize, plan and keep up with everything better, especially with using different colors (like pens, paper, etc...) for memory association.

Some close family members who have witnessed this change and timeframe think that I could've had some sort of stroke when I was Hospitalized and had my Adrenal Crisis last month. So I'll likely be having a few different types of Brain Imaging and possibly Imaging to check on my Eagles Syndrome in location to my Jugular vein very soon. I'm currently trying to figure out the best doctor for this given the combination of issues and my rare conditions. Thank you for keeping me and my family in your prayers!!!

Proverbs 11:25
The generous will prosper; those who refresh others will themselves be refreshed.

I love this verse because it promises me that every generous heart who has been there for me and my family will indeed be blessed in a miraculous way. The gratitude I have can hardly be expressed in words. My health journey (and currently Alesea's) are still ongoing and hasn't been cheap, yet our needs continue to be met. I'm so thankful for every continued prayer, donation, blessing, love and support provided. My battle didn't end with my last surgery and the fact that you have continued to be there for us has been nothing short of awe-inspiring and amazing.

I want those who are struggling in any way to know that God can and will use you no matter where you are: regardless of your health, wealth or abilities. We ALL have purpose and are precious to God. I mention this because a month ago, I found myself in one of the weakest states I've ever been in. I had made it through 8 months of extreme GI Dysfunction with lack of adequate nutrition, then survived going into a state of shock and overcoming life-threatening Adrenal Failure. I am not just a survivor, but a warrior in Christ who strengthens me as God deserves all glory for bringing me to today.

I've debated greatly about sharing this, as I don't want any credit for anything God lays on my heart or calls me to do. He deserves all glory, but I want those who feel disheartened with where they are in life to know that God will meet you right where you are and use you regardless of what's happening in your life to bless others.

As weak, sick and frail as I've felt... requiring Alesea to drive me to my doctor appointments and relying on my walker to keep my balance... Just a few days out of the hospital, God placed an undeniable calling on my heart in the busy waiting room of one of my doctor's office this day.

This is a "time-sensitive" appointment, meaning those of us there come on a monthly basis and likely will run out of our vital medications the same day. Medications that if stopped abruptly can cause extremely serious side effects which I've witnessed firsthand as stopping these medications abruptly has sadly led to the death of some of my sweetest friends fighting courageously with Chiari as they committed suicide. So, I understand how extremely important it is that these patients be seen by this doctor on this day.

In a loud waiting room filled with people, I watched as a very thin elderly man struggled with his cane in obvious pain as he was called back up to the sign-in counter. Even with my poor hearing, I very clearly heard the entire conversation over the crowd of patients waiting. This gentleman had agreed to a payment plan that he unfortunately could not afford to pay this day. The Office Staff told him that he'd have to reschedule. He explained that he didn't have the extra gas money to come back again and begged politely for them to please have mercy on him this one time and to please accept what he had, that he'd gladly give them all he had available, but they still refused.

My heart was breaking as he struggled walking back towards his seat with great sadness in his eyes, I told Alesea, "God wants me to pay it." She asked, "Do we have enough to do it?" I told her, "Yes, God always makes a way." I slowly made it across the waiting room with my walker and simply saw the face of Jesus as I looked into his soft blue eyes. I told him that "God loves you so much and he wants you to receive the care you need today and will be covering the cost." He was so humbled and asked if he could please get my information and pay me back. I told him that it wasn't my money to pay back, it was God's... but if God ever placed it on his heart to do so in the future, to feel free to pay this gift forward.

This man likely had no idea, but it blessed me immensely that God chose me to help. Not only did God choose me to help, but I received a random, completely unexpected refund check that not only covered what I paid, but was even 10% more. I just cried and Praised God. I got to show Alesea just one of the many examples in my life where answering God's call on our hearts and having faith that your needs will still be met does truly happen and not by coincidence. God's timing and His perfect plan is always precise and He can and will utilize us in what may seem to feel like some of our lowest and weakest moments. Please don't  ever underestimate your worth, you are so valuable and treasured! 

I've been so blessed to be the recipient anonymously of an amazing "Pay it Forward" initiative in honor of the late John Wernowsky and his 10 year old son Jake Wernowsky numerous times and at times of great need that were so perfectly in God's timing. When God chose me to provide this random act of kindness in the doctor's office, I thought about John and Jake's incredible legacy. I never had the pleasure of meeting this amazing family, or John's wife and daughter, but find myself overwhelmed by the beautiful lives they led together, their impact on others and the Joy, Compassion and Eagerness John had to truly be God's Hands here on earth. I urge you to please search for the "Wernowsky Legacy" Public Group on Facebook and please read the "About" or "Pinned Post" along with the uplifting posts throughout the group. Watching their selfless and divine legacy continue to grow on and multiply by others paying forward random acts of kindness is absolutely beautiful. I hope you're inspired and decide to perform a random act of kindness as well. I continue to pray for their loved ones.

It's taken hours, days to simply pull these thoughts together and although I have some difficulty expressing myself at this time, I promise it all has meaning, please bare with me...

My dear friend Jessica Bates is going through the most difficult of times. I can't completely relate, but I lost my fiancé Isaac to brain cancer many, many years ago and it broke my heart into pieces. So, I am that much more sensitive to what sweet Jessica and their young son Alexander is going through. Just 3 shorts months ago, Jessica's Husband Kendall was diagnosed with Brain Cancer. They thought they had time to find treatment and were doing so when Swelling of the Brain and Compression of the Brainstem became too much and he was recently given days to weeks. In the past week or so, finding treatment changed to bringing in Hospice. In the past 24 hours, this has changed to bringing in the 24/7 Crisis Hospice Team who are keeping Kendall comfortable as his breathing pattern continues to change and decline. Jessica has been out of work and by his side comforting him and telling him how very loved he is... while Alexander put on his very own Fundraiser for his Dad by selling $0.50 cups of Lemonade bringing in over $300! I have a tear jerking, yet beautiful photo I'd like to share soon of Alexander's very first customer, a Plano, TX Police Officer.

As I explained above, God can use us no matter where we are or what we're going through. So, although I can't physically volunteer the way I'd like, and I'm several states away, I have prayed over how I can help, and wish to pay forward some of the love shown to us. The first way is that I will be donating 10% of any donations received to help with my medical needs for the month of September to Jessica in honor of Jake and John Wernowsky and their beautiful legacy. The second way is with the kid's help, that I will be selling "Paparazzi Jewelry and Accessories" Grab Bags (Quality and Stylish $5 MSRP Jewelry and Hair Accessories) and donating ALL proceeds to Jessica less the expenses to ship. I'm not physically able to throw the traditional online parties, but I pray that purchasing a "Mystery Bag" will be fun for all those involved, but more importantly be a huge help to The Bates with their recent move, any expenses, lost of wages, and any needs whatsoever, etc... I'll be working on a Fundraiser Page with further details as quickly as I can, hopefully tomorrow as my Pain is at it's max today. Please keep Kendall, Jessica and Alexander in your prayers!!!

God bless you all! I'm so grateful for each of you.

Posted on August 29, 2017

Posted on August 29, 2017

Please note: 
*This is a compilation of several notes/updates that Belinda has tried to put together over the past month. She said some of it might be repetitive as she's sadly had a truly difficult time in gathering her thoughts and she hasn't really felt like herself on these new medications. Thank you for keeping my sister in your prayers. She's faced a lot over the past month and leading up to her Adrenal Crisis. We are just grateful that she is still here with us and has answers to some of her difficult symptoms. I believe there are a few needs she may have from Amazon, but she hasn't felt up to updating her Wish List. Her Geneticist is most concerned about keeping her stress-free and I think she has several recommendations for her. We thank you all and appreciate your love and prayers.*

Dear Sweet Friends and Family,
I want to thank you all so much for your prayers, love and support as I am recovering from Adrenal Failure (aka Adrenal Crisis). This is due to Adrenal Insufficiency or "AI" (not to be confused with Adrenal Fatigue as these are completely different). Having "AI" means that my Adrenal Glands have stopped producing Cortisol which is vital for the sustainment of human life. Cortisol is so important that when your body does not make enough of it or you become stressed (in any way: physiological, emotional, physical, injury, moving, unbearable pain, illness, hurt feelings, long travels, overstimulation, etc...) to the point all of your Cortisol is used up, you go into Adrenal Failure/Crisis which is fatal without emergency treatment. Your body deals with horrendous GI Dysfunction and drowsiness, falls into a state of confusion and shock, your organs begin to shut down and if not treated in time you slip into a coma followed by kidney failure and death. I can't say it enough, God is almighty and so amazing! His timing is always precise and perfect! I am so blessed that He provided the wisdom to my doctors in the Hospital to recognize these symptoms and save my life.

The past few weeks almost feel like one big blur as Adrenal Failure and the replacement medications for Cortisol are extremely difficult to adjust to physically, emotionally and mentally. It affects so many of your bodily systems. Alesea has been taking me to more doctors and testing than I can possibly keep up with since my discharge from the Hospital (At least 2-4 appointments every week). This alone has been extremely taxing on both my body and Alesea's as she suffers so greatly with some of the same hereditary conditions I have, like Ehlers-Danlos Syndrome and the unbearable chronic pain it causes. No one wants to see their child suffering and I can't wait to see some progress in providing her relief. We have been seeing a lot of these doctors together as I am trying so hard to help ease her symptoms and pain. I've been relying solely on the One who loves all of us the most to meet our needs and provide the strength that my body is not making on it's own. We have been so overwhelmingly blessed in so many ways and I ask that you please continue to pray for healing, treatment and the finances to cover what we need.

When I was still in the Hospital, I felt so incredibly weak and frail (I still do). I felt God telling me repeatedly and so strongly to "put on His armor" that "the adversary knows your strengths and weaknesses and he is an opportunist. He knows exactly where to hit you." (Ephesians 6:10-18). Our calling as a believer in Christ is to stand in His strength. Things that appear too big or too hard to handle aren't meant to be handled by us... Nothing is too big for our Heavenly Father. God is ultimately in control and our Victory is in Christ.

I was discharged from the Hospital under strict orders to avoid all sources of stress, do nothing more than rest, given prescriptions for steroids that I am now vitally dependent on and a huge list of doctors to follow up with. Overcoming the side effects of my new medications have been incredibly difficult and without going into great detail, I've faced more challenges and emotional stress than I could have ever imagined since arriving home. But, I wasn't surprised as God clearly warned me.

Simply having understudied and rare conditions make new doctor (or new Physician Assistant and/or new Partners in a medical practice) appointments extremely difficult as I (or Alesea) have to explain each of my conditions and how they affect me and typically have to spell them out as well. It can be extremely taxing, redundant and exhausting, especially when you are permanently disabled, need time to gather your thoughts and are primarily bedridden. Most doctor aren't familiar with these conditions as they are rarely seen and therefore not taught in medical school. I still have several more new doctors to follow up with over the next 6+ weeks. If you could kindly pray specifically for understanding, wisdom and knowledge, along with proper testing and treatment, strength and for God to meet our financial needs.

Alesea and I are trying the best we can to concentrate on vital appointments, as having to meet new deductibles for a 2nd time has been very costly and large medical bills continue to be required up front or arrive daily for both of us. I wasn't aware of just how costly our actual Health Insurance Policy was until I came home from the Hospital and was presented with exactly how it is affecting our finances. These are pretty private and specific details, but I've been very open this entire time and I'd like to ask for very specific prayers. Our new insurance premium is $1,038.44 monthly. There is a $3,000 deductible for In-Network Providers, $250 deductibles for Prescriptions plus co-pays for both. I am trying to forego some of my IV Nutrient Therapy Sessions to make certain we can see some other vital doctors. (I will get worked back in if my body becomes too shaky and faint.) This policy can not be modified or terminated until 12/31/17. So, we need to push through it for 4 more months. 

Some of my Thoughts:
1.) I have prayed and continue to seek God first for direction and discernment. Praising Him and thanking Him for every new day and blessing! 2.) I have been praying and brainstorming about Fundraising ideas and/or what to sell. We've been so blessed, in such big and amazing ways and I'd especially love to pay it forward by sending a percentage of anything sold, raised and/or donated to some of my dear friend's family members who have been affected by the flooding in TX and lost their home with no coverage for flooding. Please include them in your prayers. 3.) What Insurance Policy to choose no later than 1/1/18. I really like some of the Christian Health Policies, but they appear to have pre-existing condition waiting periods (or exclusions) and tend to require a lot of paperwork and extra steps to take that I'm not able to accomplish on my own. It doesn't look like Providers file the claim and you need to negotiate all pricing beforehand? I do love that you get to pray for others, send cards and letters of encouragement and directly help one another. I'd love to hear feedback from anyone with one of these policies or advice on other policies or a recommendation of an excellent health insurance agent to speak to.

(Please note: the update for 8/29/17 following this is not meant to worry anyone, I just kindly ask for prayers. I believe wholeheartedly in the miraculous power of prayer. God hears our prayers and knows exactly how to best meet our needs. His timing and plans are always perfect and I choose to seek Him first. He is so merciful and so gracious with His love and answers. Sometimes you may not realize that He answered your prayer, as many times that answer may be "no." Yet, don't feel discouraged. When His answer is, "no," be prepared for the greater plans He has in mind for us! Seeing His Almighty Hands at work in my life everyday is nothing short of amazing and fills my heart with joy. I pray for those who may not believe or have a relationship with Him to see and/or feel His great works. May He place a desire in your heart and/or bless you in a way that makes his presence in your life undeniable. I yearn to spread His love and compassion to all others, including some of my loved ones and even those who hurt us. God is the only one who completes us and fills that emptiness in your heart. He restores us, making us whole. And strengthens us through the same power that raised Jesus from the dead. Romans 8:11 - The Spirit of God, who raised Jesus from the dead, lives in you. And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you.)

Today... (8/29/17) I'm feeling extremely sick (with cold symptoms, chills, headache, pouring sweat, fatigue) and my GI Dysfunction is overwhelmingly unbearable. Please pray for healing and that I can figure out the right "stress dosing" of steroids to ward off an Adrenal Crisis. I kinda hoped that my 1st emergency injection of steroids would last at least longer than one day. Lol. Plus, I'm also not quite ready to repeat all the blood draws, incredibly painful phlebitis and non-stop Mast Cell Reactions in my IV's that occurred continuously in the Hospital. ;) Although, I will say that I might've fallen in love with the power adjustable bed I had there as it does provide amazing support for my painful Spine and Tailbone. Lol. (The Social Worker tried very hard to get one approved by my insurance for me to have at home. But, it wasn't in God's plans right now and that's okay.)

There's been so much going on, an incredible amount of challenges (sources of stress) that all hit at once when I came home and has continued almost daily. I continue to lift them up to God. I typically do not get "stressed out" by circumstances to the point of being overwhelmed or upset, but what might be perceived as minor stress or slightly hurtful becomes magnified and your response heightened when you are on life saving medications like steroids. I have faith that this will level out, it's simply that I'm not considered stable yet from my Adrenal Failure and my dosage is being regularly increased requiring constant adjustment to the harsh side effects. I'm really looking forward to finding that perfect dose and overcoming the side effects. I've been in so many medical offices that it would be hard to avoid illness with a compromised immune system. I Praise God for the amazing people who have provided me with the tools to monitor my vitals from bed. It's such a blessing!!! Thank you all for your continued prayers, love and support. May God bless you. xo 

Posted on July 31, 2017

Posted on July 31, 2017

Hello, Please continue to keep my sister and her family in your prayers. She spent the past week being Hospitalized due to Adrenal Failure. We praise God that the physicians discovered this life threatening issue and that they saved my sister's life. The most important part of her doctors discharge orders are to avoid stress. Belinda does an amazing job of keeping her focus on God and trusting in Him to meet her needs. But, she does have an overwhelming amount of Medical Bills/Needs and is struggling to make ends meet within the household. All of the kids in her household have medical issues, with her daughter Alesea having the most severe Ehlers-Danlos Syndrome related issues. Please pray for their health and medical needs. 

Belinda has an upcoming appointment with her EDS Specializing NeuroSurgeon in New York that would be much better to make in person, but would be costly, so she can have a teleconference appointment for $300 instead. He is brilliant at solving and treating EDS related issues and believes that a Glossopharyngeal Nerve Block could help alleviate her non-stop Nausea (going on 7 months now) and vomiting. She (& others in the EDS community) have been unable to have this procedure performed correctly locally. Her GI Issues are significant and have resulted in malnutrition and a 45 lb weight loss. 

Belinda's already had $2000 worth of Imaging, Tests and Dr. Visits that she's making payments on just to gather everything needed for the appointment with her Surgeon. Although very rare, in the EDS community it is common for the Spinal Cord to become tethered instead of dangling freely. When tethered, it can cause many severe issues ranging from horrific Tailbone pain when sitting, Scoliosis to Neurogenic Bladder Dysfunction all of which she has and is worsening. She also has absolutely unbearable Upper & Middle Back Spinal Nerve Pain that will require Surgery. Belinda said the symptoms are very similar to what's called, "T4 Syndrome," whereas the bone of your spine is rubbing up against a branch of sympathetic nerves, stretching them painfully and causing dangerous issues within the sympathetic nervous system. The sympathetic nervous system's (SNS) primary process is to stimulate the body's fight-or-flight response. Too much stimulation can result in Adrenal Failure and death (exactly what put Belinda into the Hospital this week.) It is vital that she has this Surgery as soon as possible especially considering that it could be contributing not only to her Adrenal Insufficiency, but can disrupt the GI System as well. The SNS helps regulate gut motility, the urinary system, heart rate, blood pressure, sweat, body temperature and more... all of which she is struggling with.

The issue in her Thoracic Spine sends debilitating nerve Pain into the upper extremities, along with numbness and weakness. Any use of her arms exasperates the horrific pain preventing her from being able to independently care for herself. She is praying that her Surgeon will be able to surgically repair this issue and restore her SNS functions. 

She's had a very stressful ongoing fight with appealing Insurance to cover more of these last two surgeries as her remaining balance is truly astronomical. Please continue to pray over this process as we want to do everything possible to help my sister avoid stress. My family and Belinda thanks you all so much for your generosity, support, encouragement and love. - Chelsea 

From Belinda...

Dear Sweet Friends and Family,

There's a lot on my heart to share now that I'm happily home from the Hospital. Praise the Lord! I've spent a lot of time reflecting, praying and praising God for His perfect timing. I'm so grateful for the wisdom He provided to those in my path this week which led not only to answers, but to saving my life from Adrenal Failure.

I typically refuse steroids anytime they're brought up as treatment, but this time I have no choice. Hydrocortisone (cortisol) will now play a vital role in sustaining my life with diagnosed "Secondary Adrenal Insufficiency." Please pray for my loved ones and I, as my body adjusts to these steroids, specifically that the mood swings and other negative side effects will not come into play. I welcome the relief and positive side effects wholeheartedly!!!! I pray that this is the beginning of true healing and restoration. (Well, after a few more Surgeries in NY). I'm just grateful to be armed with answers.

Unless you've directly experienced Adrenal Insufficiency or gone into an Acute Adrenal Crisis aka Adrenal Failure, (which I had gradually been building up to since at least November 2016) it's simply impossible to put the level of lethargy and extreme fatigue you experience into words. You are so weak that your body feels as if it might fall into a state of unconsciousness at any moment. It eventually will if a diagnosis is not made and lifesaving treatment administered. Your blood pressure and blood sugar feel too low and P.O.T.S. attacks become a regular event. There's days that I've felt incredibly accomplished and blessed to simply just make it out of the bed to use the restroom. Then there's days I can't even gather the strength to roll over in bed or take the blanket off if it's too hot. Finding the strength for very simple movements becomes nearly impossible. It's been very difficult to express how horrific it feels and how frustrating it is as no one can relate to this or the times that I do not even have the cognitive strength to make a phone call or put my thoughts into words, let alone sentences.

I honestly have quite a bit of needs. My family does the best they can to care for me, but I haven't really opened up to just how severe my health situation had become publicly. It's extremely hard to go from being the Caretaker to being the one in need and sometimes I just act like I'm okay. I push myself too hard to meet my own needs as to not burden anyone. But, you can see exactly where that landed me this week. The Social Worker had a list of things she felt I needed, including a Health Aide to assist me a few hours each week and a Special Hospital Bed, but Insurance refused to approve any of it. So, if you're ever near Woodstock and would like to help me with a meal (from the strictest diet ever that I can tolerate. Lol), a household chore, an errand, grab something I need while you're at the grocery store or drive me to one of my doctors. I'd be extremely grateful. I will likely be adding a few things I really need to my Amazon List.

I'm under doctor's orders to avoid all sources of stress as it is dangerous with Adrenal Insufficiency, especially with being only a few days out of Adrenal Failure. I came home to some unsettling mail from Social Security and I have to fight for benefits again, including Medicare and only have a few weeks to submit everything requested. It's not good timing, plus it doesn't help when the laptop you have all of your medical info stored on has a screen that won't work. Lol. It hurts my heart that those suffering like me should be forced to battle so hard. I would LOVE nothing more than to be able to work and support my family, but I'm simply not able to. I kindly ask for your prayers surrounding this process.

I look forward to sharing more soon... prayerfully all great news now that we have some additional answers. I just want all of you to know how grateful I am for your prayers, love, encouragement and support. God bless you all! xo

P.S. A special thank you to those who wish to remain anonymous, words simply can't express my gratitude; Gusta (MawMaw) and Tom (Dad) who made certain that I have a couple of days worth of food that I can tolerate on my super strict Low Fodmap diet and came to visit me in the Hospital. Alesea, Aj and Easton who brought me home from the Hospital, got my prescriptions and helped wash my bedding, vacuumed and handled more requests than I could possibly list. My sister Chelsea who rushed me to the Hospital at 2:30AM last week when she had been recently released the same day from the ER and was still in pain. My Mom Jodie who laundered my necessities and brought everything I needed from home to be comfortable on two separate days. (Sorry I couldn't stay awake to fully remember your visit, the IV meds were strong). And everyone else who offered to or stopped by to visit and check on me in the Hospital including Kev and my other long distance Momma Stephanie Thank you!!!! 💜❤️💙 I'm sorry if I didn't list you by name... I could go on and on. But, you all know that I love you!!!! Plus, this is beginning to sound like an Academy Awards Speech. LOL! 

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