Save Brave Belinda

For: Belinda Harrington
Woodstock, GA
Organizer: Chelsea Shelton
Save Brave Belinda (Belinda Harrington)
of $82,810 goal.
Raised by 154 donors
32% 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 May 1, 2017

Posted on May 1, 2017

Update from Belinda:
Hello Dear Friends and Family,
I want to thank you all for your continued love, prayers and support! My recovery took a shift back in December whereas I began having digestive system complications related to Ehlers-Danlos Syndrome and Neurological Dysfunction. Including: Gastroparesis (a delayed emptying of the food you eat from your stomach to the small intestine). Gastritis (inflammation of the stomach lining from this delayed emptying). SIBO ("Small Intestinal Bacterial Overgrowth" a painful infection from under digested food passing into the small intestine that requires a very strict diet as not to feed the bacteria and worsen the infection. The bacteria tends to prevent absorption of minerals and vitamins that are necessary to sustain life.) Along with Inflammation of the Liver & Pancreas and Motility Issues throughout my digestive tract. It's basically the perfect storm of conditions that caused a domino effect of issues. It's a good thing that when the storms come, I'm not afraid to dance in the rain and praise God for each day! 

I am humbled and grateful beyond words to the beautiful person(s) who have faithfully answered God's call to not only continue to meet our needs, but to continue feeding and enriching our soul. Thank you so much!!! 

After my course of strong antibiotics, I had 4 and a half days last week, that I felt more like "Belinda." Unfortunately, I flared back up and haven't been able to eat anything. I've become faint and weaker, but today, I will be blessed to receive IV Nutrient Therapy known as the Myers Cocktail. This will bypass my digestive system and provide vitamins, minerals and antioxidants directly to the bloodstream. Then Thursday, I will see my doctor again. 

The pain in my Thoracic Spine has kind of taken a back seat to my stomach issues, but Physical Therapy is still helping. I'll be meeting with the Anesthesiologist at Pain Management about possible T-Spine Injections or Nerve Ablation in Mid-May. Our original hope was that it was "referred pain" from my neck and would disappear with my neck pain with my surgeries (which I'm beyond grateful for!) But, the pain is coming directly from my Thoracic Spine. 

God bless you all! - Belinda 

Posted on February 23, 2017

Posted on February 23, 2017

Hello Everyone,

It has been a while since we posted an update. My sweet sister has been wanting to provide one, but she is not doing well. I want to thank the kind people who have checked on her and asked how she is doing, along with those who have continued to pray for her and donate. Continued donations have been much needed and we are so thankful!

The following is an update Belinda attempted to write many weeks ago. I will add to it what she is currently going through at the end. Please pray for her and consider donating if you can. She has more medical bills and prescription costs than you or I could even imagine. 

From Belinda:
"I want to thank all the beautiful people who continue to remember me in prayer, love and support. You are amazing and a blessing! With ongoing care, follow up, prescriptions and issues... I couldn't have done it without your generosity and answer to God's calling. Thank you so much! 

It's hard to gather the words and find the strength to provide a complete update right now. By this, I mean I am so lethargic and fatigued that I'm mostly bedridden still. Even using my fingers to type is difficult and hurts. I believe that my cortisol is likely extremely low again following 2 weeks of battling the flu, then a respiratory infection and 3 weeks of severe stomach issues. 

My surgeries were successful, but much rehabilitation is necessary. However, my life was saved! What a beautiful gift that both I and my family are forever grateful for each day! God is great! I knew a big recovery would follow these two big surgeries. Dry needling is desperately needed to relieve the unbearable pain caused by spasmodic muscles that are pulling so tight, they are causing over rotation of my thoracic vertebrae and rib subluxations. Sadly, this can not be done until I complete several intense levels of the Muldowney Protocol for Ehlers-Danlos Syndrome in Physical Therapy. Although difficult, I feel blessed to have found a physical therapist willing to work on this program with me and grateful to the sweet person(s) who helped me obtain the home equipment to complete. This will help strengthen my muscles enough for the dry needling release to be successful in the long term and to prayerfully improve my quality of life. Pushing through surgeries was the first step and I ask for your prayers as I work towards my goal of functioning in daily life again." 

From Chelsea again...
Belinda's stomach issues have gotten very severe. Her entire digestive system, beginning with her esophagus through her colon have slowed and basically shut down. Tomorrow, she will see her gastro doctor. So far, she has lost 16 lbs. and can't even tolerate baby food or liquids. She believes that this is likely Gastroparesis, which is paralysis of the digestive tract. 

Many individuals with Eagles Syndrome, Neurological Issues and Ehlers-Danlos Syndrome can develop it and my sister has all three. She has desperately wanted to hold off on Eagles Syndrome surgery back in New York, but this may make it more urgent. She anticipates the possibility of a feeding tube along with more tests and imaging. 

My my sister is the strongest person I know and it hurts me seeing her this way. Please pray for doctor appointment, for answers, treatment, healing and her continued recovery. Also, please pray for her insurance appeals. She still has around $1 million still pending appeals, $450,000 paid and $258,100 denied and now her responsibility to appeal. As sick as she is, this wasn't great timing for the appeal to become her responsibility. Please pray for God to give her the strength to take care of it. 

Thank you all for loving, caring for and praying for my sister. 

Posted on September 23, 2016

Posted on September 23, 2016

From Belinda: Prayer Warriors... I'm having some complications. My surgeon hopes it's due to my tiny stature of the neck and the unique positioning that had to be done to perform this surgery, but must rule everything else out. Lots of tests to come today. Horrific night. I can't possibly put into words how intense my pain is and the suffering I'm going through. My doctor is submitting new medication orders to prayerfully help. Please pray. (I'll have Reed to update).

Ways you can help:
Pray, Donate and Click "Share"

PayPal: [email protected] Postal Mail: PO BOX 2184 Woodstock, GA 30188

Amazon "Belinda's Surgeries & Recovery" Wish List: (((( this will be updated as needs are assessed in the Hospital following surgery ))))

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