Save Brave Belinda

For: Belinda Harrington
Woodstock, GA
Organizer: Chelsea Shelton
Save Brave Belinda (Belinda Harrington)
of $82,810 goal
40% Complete
Raised by 188 donors

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 May 20, 2018

Posted on May 20, 2018

Update from Belinda: 

Dear Beautiful Friends and Family,
I’ve wanted to provide an update, but I’m at a point where it’s extremely hard not only to gather my thoughts, but to share what is currently going on. Life is very challenging at the moment and my health has taken a setback. Please know that this is very difficult for me to open up about, all things that Satan would love for me to feel shameful, worthless and anxious about. As hard as it is, I’m refusing to accept those feelings. But, I need my prayer warriors by my side more than ever right now... knowing that I won’t face these battles alone. There is a lot on my plate. 

My Social Security Disability has been under (a normal) “long review” since around the time I was Hospitalized late July 2017 and my Adrenal Insufficiency was finally diagnosed. I recently received confirmation that my review has ended. This came with a notice that my Disability Income and Benefits are terminated effective May 2018 (now). Although, I know that God is in control... it’s still extremely difficult news as it’s my only source of income. I’m unable to work as I am still disabled and dealing with ongoing medical issues. Please pray that I may have this decision appealed. 

Emotionally and Physically, this notice from the SSA has taken a huge toll on me. Any form of stress can be life-threatening for me due to Adrenal Insufficiency. I’ve actually had 2 recent Adrenal Crisis’s (Adrenal Failure) for which emergency doses have been taken. It took me a full week of praying before I could even share this information with my family & children as I knew they would be concerned, especially given all current events in our lives. 

Please kindly consider praying over my (& the kids) health care needs including Doctor Appointments and Medications as Insurance is ending June. I’ve also had many medications stopped, changed or altered due to a new GA law effective 7/1/18 and this has been very difficult on my body.

In addition to other Medical Issues... My GI System Dysfunction has been very debilitating for me. It has sadly escalated with all that’s going on. My GI Dysfunction includes, but is not limited to: a paralyzed colon, various neurological & EDS related problems which cause unbearable and debilitating pain throughout the GI Tract which has me curled into the fetal position crying and screaming at it’s worst simply from food. This is alongside nausea, vomiting, diarrhea, malabsorption, etc... This has been an ongoing issue for over a year which has even required IV Nutrient Therapy to sustain me. (I’m so grateful for the beautiful hearts who made certain that I could receive my IV’s.) Unintentional Weightloss has been problematic, especially as those who don’t understand my medical issues tell me that I look anorexic and to, “stop losing weight.” I’m down to skin & bones, so small that I’ve had no clothes to fit and appreciate what has been graciously donated to me. I’m wearing the tiniest sizes available: zero’s and extra smalls/smalls in ladies alongside larger children’s clothing. After receiving the termination notice, I dropped an additional 10 lbs and it’s been a real setback for any progress I was making. 

Completely moving everything salvageable for both households has not occurred yet. With my income terminated, even thinking about hiring or finding help and lining up a U-Haul has been difficult for me. I’d appreciate prayers over accomplishing this. 

My Pain has increased so much in intensity. Both physically and mentally, trying to work on appeals, obtain records, request physician letters, complete disability reports, etc... is too much for me. My joints, tailbone and spine already hurt, but after losing down to skin and bones; it hurts even worse. I also need prayers over my physicians that they may open their hearts and take the time to please provide letters detailing my issues, limitations, etc... 

I thank you all for your continued love, prayers and support. Your servant hearts amaze me and I am so grateful and blessed for every prayer, scripture, along with everything that’s been provided, donated and given to our family. May God Bless you! 

Posted on March 6, 2018

Posted on March 6, 2018

From Belinda:

Dear Sweet Friends and Family,
In providing this update, please know that it has been one of the hardest to share. I feel very vulnerable in being this raw, open and honest, but I have done so throughout my journey as I want others to see what keeping the faith and relying on the Good Lord looks like. I ask kindly that you please consider praying for God’s Divine Intervention and His Will in what is an extremely difficult time in all areas of our lives.

My daughter Alesea is under the care of my Neurosurgeon in NY as she becomes worse daily. We must complete a CINE Brain MRI as soon as possible (Approximately $2,000 out of pocket before her deductible is met and Insurance pays on this or any other medical care that is ongoing on a monthly basis).Sadly, Alesea has no cerebrospinal fluid (CSF) flowing to an important part of her brain due to Chiari Malformation. This MRI will show how restricted and dangerous it is or our prayer, that she has additional flow near the inner part of the Brain stem. Once completed, Insurance will then authorize the urgent testing of a special MR to check for what could be an occlusion (brain aneurysm). Her conditions have become debilitating and watching her suffer in pain like I have is absolutely breaking my heart. Once these tests are completed and reviewed, we have been asked to fly out to NY for further testing that can only be completed there (we tried locally and the results were inconclusive). Then to discuss surgical options in person while going over the results. Her monthly medical costs in addition to mine have my finances dipping into the negative and I’ve been unable to get her in for even the first test. Please pray for God to meet these vital needs.

At this moment, my doctor has recommended that we find somewhere else to live immediately and consider everything we own a total loss as a toxic black mold has been exposed/located and it is not covered by insurance. There are very few things that are salvageable and we will all basically be starting again with nothing, especially when it comes to fully upholstered goods like a mattress, sofa and items that can’t be fully cleaned. By we, I am referring to myself and the 4 kids. Sadly, my husband and I are separating and I ask that you please pray over him. I am strong in my faith and rely on God, but it’s not an easy situation for anyone involved.

I lost my career back in 2011 due to my medical issues and will be living off of a small fixed income while supporting my children who have special needs and/or suffer from the same debilitating hereditary conditions that I do, which means they can’t contribute financially as they’d like to. I am struggling to locate an apartment that I can afford along with coming up with multiple deposits (including pet deposits so we don’t lose our beloved fur-babies) all while trying to maintain our regular medical treatments and praying for a way to complete the vital tests for Alesea before her out-of-state & out-of-network Health Insurance comes to an end through my husband’s employer. I haven’t been able to find vacancies at multiple income based apartments (which are still priced high/out of budget and most have smelled of mold and mildew which I’m trying to get us away from). I’m really shocked at the Market Rates of Apartments. I’ve looked at places we were tenants at before and they were all over $1400/month. Unfortunately, I’m finding this to be a trend with rent running from $1100-$1500 (on top of me requiring no stairs and a main level entrance). To provide room for a sweet toddler full of energy, we had originally hoped to find 2 separate affordable apartments (or even a home for rent). But, we just need a place to squeeze into and call home for now... as I pray for God to meet our needs, not our wants. Especially as our mattresses are not salvageable and we are starting over with basically nothing. Once God leads us to a home or I can get a Storage Facility, I may put together an Amazon Wish List of items we need most in hopes someone might have something similar to donate. If anyone has items they planned on donating somewhere, we’d feel so blessed with anything as we’ll have almost nothing.

As for my health, the exposure here is taking it’s toll on my body especially being steroid dependent without a normally functioning immune system. From headaches and fatigue to infections and hearing loss and many, many more. I began to enter Adrenal Crisis Sunday... but by the Grace of God, it was averted and I avoided another Hospitalization. I still have a “Treatment Plan” that I am working on with my Neurosurgeon in NY, but I am trying very hard to be strong for my family during this time and appreciate your prayers wholeheartedly.

This fundraiser is still active should anyone feel led by God to donate financially, which would be extremely helpful at this time. But, your prayers are so important to me and I appreciate you covering us in prayers. With God nothing is impossible and I trust Him to lead the way and move what appears to be mountains in our lives at this time. God bless you for keeping us in your prayers. I am so grateful for each and everyone of you and every blessing sent our way. (Specifically, at 4PM today 3/6/18 - we will be looking at another potential place to live if you'd like to pray over this appointment.) 

Blessings and Love,

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.

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