About Belinda

(L) Belinda LIFE Magazine Anniversary Ed. National Delta Ad | (Mid) Belinda Interviewed for Feature Newspaper Article | (R) Belinda Modeling

"About Belinda" describes Belinda's battle for her life and journey with Chiari Malformation, Ehlers Danlos Syndrome, CranioCervical Instability and additional co-morbid conditions. We are in the process of adding external links to many of the medical terms mentioned within this article. Clicking on these hyperlinked words will open up a new browser window to a website we feel defines the term best. Closing the new window should bring you back to this page. Thank you for visiting, we are so glad you are here and appreciate your support and prayers.

1985: Belinda dropping an ice cream cone on Paul Young's foot in Mike & The Mechanics "Taken In" Music Video
Belinda held over 100 Beauty Titles
Belinda in Macy's Ad
Belinda was born and raised in Acworth, GA. She loved playing with Matchbox cars and participating in her local Church Group. Although she kept it pretty quiet from her peers, she was a talented and accomplished model and actress by a young age. She was in movies, including one with Chuck Norris, and can still be seen as the little girl dropping an ice cream cone in the 80's music video, "Taken in" by: Mike and the Mechanics. By the age of 6, she had even qualified for the Screen Actors Guild. It wouldn't be long after all this that Belinda would begin facing the first symptoms of a serious Neurological Disorder that would remain undiagnosed until adulthood.

(L) Belinda National Talent Holder for Dance | (Mid) Belinda Ad for Foley's | (R) Belinda Cheering at Age 13-14
Belinda faced many painful issues and illnesses throughout her childhood. She threw up every morning of 1st grade, but was lucky that she attended a small private school, "North Cobb Christian School" and they were kind, compassionate and worked with her. Although she underwent every test possible on her stomach, including drinking those fun shakes. There were no answers. Eventually, the cyclic vomiting ended, but Belinda always became nauseated easily. Joint pain and stress fractures became a normal part of her childhood and teen years. There were many times she had to wear casts and braces. She spent most of her Physical Education classes "sitting out" due to these issues and the fact her lungs would freeze up if she ran and she would be unable to breathe. Still, no answers could be given. She caught everything that went around including the Flu, Strep Throat, Horrific Chicken Pox, Fifth Disease, Epstein-Barr and a battle with Guillian-Barre Syndrome.


Belinda's Beautiful Children: Alesea and Easton
As time went on, Belinda was blessed with 2 beautiful children and an amazing career. She was also stricken with unrelenting pain in her feet. Every step she would take felt like walking on glass, but she was determined to support her family and push through. As she fought for answers, her pain became more and more crippling and Belinda was ready to give up and settle into a life in a wheelchair when she finally received a diagnosis of Psoriatic Arthritis. The diagnosis made sense as Belinda had suffered various joint pain since she was young, so she began a form of chemotherapy and later on the addition of the biological medication Humira. It was after the birth of her daughter that migraines began and after the birth of her son, that Belinda faced her first hemiplegic migraine with aura. She honestly thought she was having a stroke when these hit the first few times. One side of her face and body would go numb, she would collapse, her vision would become blurry and animated with bright wavy lines until she would go completely blind. A Brain MRI would come back "normal" and again she would have no answers. She had to learn to live around these scary neurological issues which would hit out of nowhere.


(Left) 2006 Isaac & Belinda | (Middle) Easton, Belinda & Alesea Easter 2007 | (Right) Isaac & Belinda 

The medications had severe side effects on Belinda, but she put everyone else first and was determined to not let them phase her. By the grace of God, Belinda was able to balance her career, children and being by Isaac's side as he battled a brain tumor. Belinda was heavily devoted to her faith, regularly attending ladies Bible Study, hosting them and looking to God for hope during this difficult time. They devoted their time together to helping others. From drawing sweet notes for less fortunate kid's summer lunches through M.U.S.T. Ministries to watching Isaac continue to play drums in the worship band at NorthStar and Johnson Ferry Baptist. Then Isaac's tumor returned. This time it was cancerous and it maliciously wrapped itself around his brain stem and could not be removed. He battled cancer for almost a year, quickly becoming paralyzed and wheelchair bound before Jesus took him home. He taught Belinda so much about strength and faith throughout this battle. She never realized that these things he had taught her would so soon come into play after Jesus took him away.

Belinda and her family writing inspiring messages for needy families. 

By 2011, the smile had returned to Belinda's face. She had reunited with her sweetheart from high school Reed, she had 2 healthy kids who were prospering and doing excellent in school and she had a career that she absolutely loved. She had been selling high end furniture by Ambella Home Collection where she once modeled regularly, at the Mart in downtown Atlanta. Odd symptoms led Belinda to fear that years of chemotherapy and biological medications were taking a huge toll on her body. One of the first signs was that she couldn't stay well. She desperately wanted to be a part of the Children's Ministry at church and volunteered to watch the toddlers on Sundays. But by every Wednesday, she would be calling in sick. So she had to stop volunteering. Weeks went by, but she would find herself so sleepy and fatigued by mid-week that she would have to sleep in and go in late or return home early because she couldn't keep her eyes open. She tried everything to overcome this overwhelming sense of drowsiness including taking up to as many as 10 shots of espresso a day from Starbucks, but she would still find herself falling asleep behind the wheel on her drive home which scared her greatly. She then began having numbness in her arms, which she thought was probably caused by too much caffeine. Her GI system, which had left her vomiting every morning of 1st grade began acting up. Again, she figured it was a side effect from the caffeine. She then found herself writing everything down in a notebook at work as she wouldn't be able to recall what was said during a call and she would forget to send reports or complete important tasks. She was losing her train of thought and wasn't able to come up with the right words and she found herself slurring words constantly. She couldn't focus and stay on task and the bright halogen lights of the showroom were blinding her, leaving specks of lights in her field of vision.

Belinda and her High School Sweetheart Reed Harrington at their beautiful wedding in the Riviera Maya. 

Then "it" happened. "IT" being the worst pain Belinda had ever felt in her neck. She fell out of her desk crying, screaming even, when her co-worker Barry arrived. He asked, "What was wrong?" She could hardly even get any words out. She just knew something was very, very wrong. Belinda honestly felt like she needed to go to the hospital, but she could not drive. Barry located a Chiropractor near their building, walking distance, just across the street and she was worked in. It was her only choice and her biggest mistake at the same time. NO ONE with Chiari Malformation or Ehlers Danlos Syndrome should ever be worked on by a Chiropractor, but there were no images taken, no diagnosis given, no referral requested - he was in it for the money and Belinda's future would be destroyed because of it. Each time he adjusted her, the pain increased and spread. She had never been to a Chiropractor before and he tried to assure her that this was completely normal and necessary to get well. The more times she went, the more pain and tears she had. She only continued going to him because her biggest fear was losing the career she loved. Her boss was already upset with her for the sick days she had taken and she couldn't risk taking anymore time off to go to the doctor. For this, she could go during her lunch break or before/after work.

Belinda in debilitating pain with an ice pack around her neck.

Belinda found herself going to extremes just to keep her job. She raised her computer monitor by stacking books beneath it so she wouldn't have to move her neck. She drove to work with a heating pad around her neck and used it all day in between customers while she was at her desk. She continued going to the Chiropractor, she used BioFreeze throughout the day and took over the counter pain medications and anti-inflammatories. One day when writing a long order, Belinda could no longer feel her fingers. She had to ask Barry to complete the order for her and she just burst into tears. Between the horrific neck pain, memory loss, numbness down both arms and falling asleep on her way home... she knew she could no longer work. She finally went to the doctor who wrote her a release from work while they tried desperately to figure out what was wrong. Belinda was sent from doctor to doctor. First an orthopedic who couldn't get over her incredibly severe whiplash and continued to question when she was in a car accident. He could hardly believe that she had not suffered a traumatic injury. He sent her to Physical Therapy. Physical Therapy couldn't believe the tightness in her muscles as Belinda cried and screamed as they touched them, then she cried and screamed writhing in pain until she fell to sleep afterwards. They mutually agreed something else major was wrong and she was sent to a Spine Specialist. The Spine Specialist was shocked. Belinda's reflexes were so off the charts that the doctor wanted her to see a Neurologist and have an MRI immediately. By this time, Belinda's boss was tired of waiting and she lost the job she loved so much for almost a decade, along with the income she needed so desperately to support her beautiful kids. But, Belinda's pain was so horrific, she couldn't possibly work there or anywhere. The pain, head pressure and issues were unbearable.

Belinda's doctors would tell her that her imaging was "normal." Yet, Belinda's pain only increased and her symptoms worsened. She was sent to Pain Management who tried every conservative treatment possible with no relief. Then, seeing a positive Hoffman Reflex (which typically means there is spinal cord impingement), her pain management doctor would send her to a top local Neurosurgeon. So excited to receive answers, Belinda could not wait to see him. At the visit, she complimented this doctor, telling him how happy she was to be seeing him as she had heard how terrific he was and he replied sternly, almost yelling at her that she was wasting his time. "There is nothing wrong with you, you are crazy and it's all in your head." Belinda began crying as he then said, "See, you are just depressed. You have done this to yourself." Belinda began sobbing and assured him that she was not depressed, this happened at the height of her career, when she was so happy and in love, that she was not crazy nor making anything up. Belinda left this visit absolutely heartbroken. This visit sent Belinda into a hopeless episode of depression and she nearly attempted suicide. But, she turned her hurt into fuel to find answers, prayed for God's Will and read over her first MRI which revealed "Cerebellar Ectopia" better known as "Chiari Malformation."

Purple is the Official Chiari Malformation Awareness Ribbon Color.

The minute Belinda read the symptoms of Chiari Malformation she knew she had found her culprit. It was identical to the symptoms and issues she was experiencing and nearly matched the typed list of issues that she carried to each doctor visit.

Chiari Malformation can cause the following symptoms...
  • Amplified Pain due to confused Pain Signals from compressed Brain stem, Spinal Cord and Cranial Nerves disrupting autonomic nervous system making Chiari Malformation UNBEARABLY PAINFUL.
  • Debilitating Headaches
  • Pressure in Head
  • Severe Neck Pain
  • Nerve Pain
  • Lhermitte's phenomenon (electric shocks - pain shooting through body)
  • Fatigue
  • Nausea
  • Migraines, Auras
  • Weakness
  • Facial Pain
  • Dizziness
  • Memory Loss
  • Visual Disturbances including, but not limited to... loss of vision, spots or specks in vision, double vision, blurry vision
  • Nystagmus
  • Sensitivity to Light, Extreme difficulty adjusting to light change
  • Ringing in Ears, Hearing Loss, Intolerance to Loud Noise, Fluid Sound in Ears
  • Tingling and Numbness in the extremities, face and head
  • Equilibrium Issues, Balance, Clumsiness
  • Vertigo
  • Profuse Sweating, No Sweating
  • Pain throughout Spine
  • Pain in Tailbone
  • Burning Pain throughout Shoulder Blades and Extremities
  • Difficulty walking
  • Loss of fine motor skills
  • Pressure and pain behind the eyes
  • Muscle Spasms/Contractions
  • Insomnia
  • Sleep Apnea
  • Sleep Disorders
  • Syncope, Fainting
  • Slurred Speech
  • Frequent Urination, Incontinence
  • TMJ, Pain and Tension along jawline to ears
  • Difficulty Swallowing, Choking, Drooling
  • Poor Circulation, Cold Extremities
  • Difficulty focusing
  • Menstrual Cycle Issues, Missed Periods, Increased Cramping
  • Heart Problems
  • Restless Leg Syndrome
  • Respiratory Issues
  • Loss of Libido, Lack of Sensation in Pelvic Area
  • Sensation of being "Hung to death" when sitting/standing upright
  • Gag reflex problems causing vomiting or no gag reflex
  • Unequal pupil size or Pupillary dilation
  • Changes in Blood Pressure
  • Drop Attacks
  • CSF leaking from nose, ears, down throat
  • Impaired Coordination
  • Polydipsia (extreme thirst)
  • Severe cases may develop all the symptoms and signs of a BULBAR PALSY
  • Paralysis
  • Sudden Death

In Belinda's words... "No one can truly understand just how unbearably painful Chiari Malformation can be. When Chiari pain is at it's prime... The pain is more intense than giving birth without an epidural. It feels as though your spine is being ripped out of your back, your brain is going to explode through the top of your skull, your neck is being sliced open with a jagged blade and stabbed repeatedly, your shoulder blades, arms, ribs and back are doused with gasoline and lit on fire while you are being hanged to death."

"Neurology Now" with feature article on Roseanne Cash

There it was on her very first MRI that she was originally told was "normal." The MRI she had taken to every doctor. Armed with an answer and determined to find a Neurosurgeon to help her, she began making appointments with local Neurosurgeons. Appointment after appointment, Belinda left crying as she was told "no." Belinda just couldn't understand. At one of these visits, Belinda saw her distant cousin on a cover of, "Neurology Now," and read about it taking 10 years for her to finally receive the surgery she needed for Chiari Malformation. Belinda had never met Roseanne Cash, but she reached out to her through social media and was thrilled to receive some advice. Roseanne told Belinda to find a true Chiari Specialist.

Belinda's beloved Brain Whisperer, Dr. Rosner & "Chiari Angels"

Belinda joined some online groups for Chiari Malformation and researched Chiari Specialists. She quickly learned that seeing a TRUE Chiari Specialist was going to require traveling and money. One she didn't feel up to doing and the other she could not afford. It was going to take help to make traveling and money to happen. Belinda prayed and prayed about it and her heart felt led to Hendersonville, NC and Dr. Rosner. She made her $900 cash appointment on faith and began selling everything she owned until she had enough to go. She was so anxious, but was met with compassion, expertise and someone who genuinely cared. Dr. Rosner spent almost 3 hours with Belinda providing a TRUE neurological exam, going over her medical history and then comparing what he saw in Belinda to her MRI. There it was plain as day, Chiari Malformation along with Empty Sella Syndrome, Intracranial Hypertension, suspected Neurogenic Bladder Dysfunction and POTS, Thoracic Scoliosis, Cervical Stenosis and Kyphosis. Belinda couldn't believe that someone had finally taken her seriously and explained all of her symptoms and imaging then offered surgery. Given her previous experiences, after the appointment was over, Belinda asked Dr. Rosner, "You're not going to change your mind are you? I mean, I can really have surgery?!" He smiled and assured her that he wasn't going to change his mind. Belinda went for all her follow up testing and everything Dr. Rosner expected was confirmed, she also had Neurogenic Bladder Dysfunction and Postural Orthostatic Tachycardia Syndrome. When she entered the Hospital Dr. Rosner uses and every wall was covered with a verse or painting from the Bible, she knew this was God's affirmation that it was time.

3/25/2014 following Posterior Fossa Decompression Brain Surgery 

There's a saying in the Chiari Community, "You know you have Chiari when Brain Surgery suddenly seems like a great idea" and Belinda was THERE! She scheduled her invasive brain surgery without hesitation to become an official "Zipperhead" and placed it in God's Hands, praying that she could come up with the funds necessary to make the very costly, out of network surgery happen. Her health began declining quickly. Her sweet kids were pushing her in a wheelchair and she had become completely bedridden. The pain that she couldn't handle, worsened drastically and her Intracranial Pressure was at an all time high. Word of Belinda's condition spread and a local church and sweet members stepped forward to help her. She was able to move her surgery date up and by the grace of God and the beautiful helping hands of family, friends and strangers... Belinda finally had her Brain Surgery on 3/25/14. She was elated to be having this surgery and smiled up until the moment they wheeled her back.

(L) Belinda & her Dad prior to 2nd Brain Surgery | (Mid) In Hospital Post Surgery | (R) Belinda fighting infection/PICC Line

Although his employer was fully aware of all that was going on and he had permission to be by Belinda's side during this risky and serious surgery, her husband came home with tears in his eyes as Belinda lay motionless in the bed recovering, just 1 week post-op. His employer of 7 years let him go during this difficult time. It hurt deeply, especially since they were fully aware of their circumstances. They lost their only income and the health insurance that was so desperately needed at the time. But, Belinda knew God had better plans and placed her trust in the One who loves us most. Without Reed home and by her side, she couldn't have made it through that first month of recovery. She had to relearn to walk, move and function outside of brain stem compression. She had anticipated a rough and painful recovery, as it is truly an invasive brain surgery, but Belinda's pain continued to worsen. When she signed the consent to surgery, she never really paid any attention to the possible risks associated with the surgery. As far as she were concerned, with her loss of independence, feeling like she was a burden to others and dealing with pain so intense it would cripple the average person... the risk of death was worth it. But, she had never considered the other risks until her incision turned bright red, became incredibly itchy then started oozing yellow and green drainage. The pain was merely unbearable and multiple infections set in. She soon found herself facing brain surgery #2.

Belinda's Family who couldn't be present with her during this 2nd Emergency Brain Surgery got together and tie-dyed Purple (Chiari Awareness Color) T-Shirts. They sent Belinda this beautiful photo to show their support for their Mother, Daughter, Sister and Granddaughter the morning of her surgery. It brought tears to Belinda's eyes. 

Belinda never anticipated another costly brain surgery and expenses to travel to North Carolina and this one was HARD! Her Husband was unable to attend as he had finally found a new job, but her Dad and Elvie were happy to carry her. Unfortunately, they had to leave for reasons out of their control the day of Belinda's surgery. Belinda found herself blessed by one of her new Chiari Sister's who lived in the area. (Those with Chiari Malformation refer to one another lovingly as Chiari Brothers and Chiari Sisters). Eyrin never left Belinda's side that first night and then spoiled her with treats, a beautiful Angel that sits in the view of Belinda's TV to this day to remind her of her real life Angel Eyrin and the sweetest card from Eyrin's niece. Belinda's beloved surgeon told her that because she had infection, they could not use steroids this time. This meant no masking any pain and she'd be reliant on regular pain meds for relief. Belinda's pain was already beyond what she could possibly handle, but her surgeon promised her she would wake up on a pain pump and everything would be well controlled. Belinda woke up in recovery screaming, hands clenched not understanding why her pain was so intense. There was no pain pump. Belinda begged her surgeon to relieve her pain, but she was forced to suffer and couldn't understand why?! Every second felt like a minute and every minute like an hour as the pain had overcome Belinda. She would continuously suffer and cry until the cultures, that were taken from deep within during surgery, came back positive for multiple infections. Then her surgeon agreed to providing stronger pain medication. The days she suffered horrific pain, feeling her pain was being ignored, really left a permanent mark on her. It hurt her deeply and this is now her biggest fear going forward with any surgery ever.

10/2014: PICC line for multiple infections with DVT (blood clot)

Belinda spent about a week in the Hospital in North Carolina finally coming home with a PICC line for the fungal and bacterial infections. Within the first week of having the line, she began feeling enormous pain in her arm. Typically, Belinda has to be half dead or bleeding from every orifice before she will go to the doctor or emergency room. So, she waited until it was out of control unbearable and she had lost the ability to use her hand. An ultrasound revealed a serious DVT (blood clot) in the brachial vein which leads to the heart. Belinda was placed on Xarelto and monitored. Her PICC line continued to hurt her arm the entire time. About 1.5 months in, she began having heart palpitations and extreme heart fluttering every minute or so. She was white as a ghost, losing weight drastically and feeling faint. An ambulance was called and she had developed Neutropenia. 2 weeks later, the PICC line was stopped and pulled out, but it was too late. Belinda found herself hospitalized fighting deadly C. Difficile (caused from all the high powered antibiotics in her fragile system) and internal bleeding from the Xarelto. All within 9 months of her original Posterior Fossa Decompression Brain Surgery.

12/2015 Belinda's Hospitalization battling deadly C. Difficile and internal bleeding. (L) IV Meds & Fluids. (Mid-L) Draws for Blood Testing and IV misses. (Mid-R) Belinda (R) Liquid Hospital Diet

Belinda had remained mostly bedridden and severely ill since these surgeries. Her all day, every day pressure headache seemed to be gone as the Cerebral Spinal Fluid flow had been restored. Similar to taking the cork out of a wine bottle with her Cerebellar Tonsils no longer stopping up her Foramen Magnum and causing compression. But, Belinda's unbearable neck pain, nerve pain and thoracic/ribs pain still worsened as yellow and green infection continued to ooze. All those antibiotics plus a brain surgery and the infection remained. However, she had no time to focus on that as fighting C. Difficile had taken every ounce of her being. She had to switch to an all liquid diet and purchase month after month of extremely costly antibiotics, continuously undergo testing like colonoscopies and CT scans. By April, she was losing her battle. The C. Diff was unbearable and her incision was even continuing to ooze with infection when a dear friend recommended these premium vitamins with probiotic shakes. They literally changed her life.

(L) 2/7/15 - Continued Incision Infection | (Mid) 2/11/15 Belinda Hospitalized | (R) 4/5/15 - Continued Incision Infection

By May, Belinda was clearly winning her battle. First, her test for C. Difficile finally came back negative. She was overjoyed and beyond relieved! Then her incision dried up and stopped oozing. Imaging would reveal that all infection had cleared from her brain!!! Belinda and her family couldn't be more thankful. She was able to get out of the house now, enjoy light activities and was regaining energy. She truly felt she was coming down that big mountain.

September 2015

Belinda was somewhat enjoying life again when her neck pain continued to increase. She prayed and hoped that she was just overdoing it, but this just was not the case. Her beloved neurosurgeon told her that she was not a candidate for any further help due to her complex recovery and shouldn't consider doing anything for a few years. That answer was not okay for Belinda. Her neck pain was so intense that she was quickly finding herself bedridden again and unable to function. It felt like someone was choking her and her neck felt like she was being stabbed. Nerve pain was writhing down both arms to her fingertips and all of her upper/mid back was simply on fire with nerve pain and muscle spasms. A few years wasn't going to work. She couldn't live like this and had already suffered for so long. Belinda was determined to achieve optimal health and prepare her body by using a combination of super foods and all of the products offered by the company she gets her premium vitamins and probiotic shakes from (which could have filled in all her nutritional gaps on their own.) Belinda thought a simple disc replacement or cervical fusion surgery would do the job, until everything progressed and she found herself receiving THE ANSWER for all the issues she had dealt with for so very long.

BEFORE | AFTER

Belinda's daughter was referred to a Geneticist who happened to be extremely well versed in Chiari Malformation and all related conditions. This appointment led to the entire family having extensive DNA genetic work-up and clinical testing as they returned for several visits. Both Belinda, Alesea, Maya and Easton have been diagnosed with a Connective Tissue Disorder known as Ehlers Danlos Syndrome or "EDS." EDS causes all those painful joint issues, GI problems and everything else Belinda had no answers for as a child. This also means her "diagnosis of exclusion" for Psoriatic Arthritis was incorrect and she never needed Chemo and Biological drugs. In fact, the lesions thought to be Psoriasis on her scalp never returned once blood flow was restored to the area following her 1st Brain Surgery. Ehlers Danlos Syndrome does not play nicely with Chiari Malformation. Especially for those who have undergone the invasive Brain Surgery to decompress Chiari Malformation (regardless of how perfectly it was done). Belinda's Chiari Malformation and Ehlers Danlos Syndrome caused a dangerous complication known as CranioCervical Instability or "CCI." Her decompression surgery caused it to escalate quickly and caused Belinda's health to deteriorate rapidly as severe pain and neurological issues progressed daily. With CranioCervical Instability, every time Belinda moves, her Brain Stem is 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 is paralysis, organ failure, feeding tubes and death.

Example of CranioCervical Instablity: Brain Stem being squished by bone with movement | Source: Neurosurg Focus

Belinda is suffering greatly and every day becomes harder for her to push through. She barely sleeps as she deals with constant burning nerve pain, stabbing pains in her neck and exploding pressure in her head. She has already developed permanent neurological damage, cortical blindness, neurogenic bladder dysfunction, P.O.T.S., weakness & loss of fine motor skills, gasping for air in the middle of sleep and she loses feeling in her extremities nearly blacking out when she sits/stands.

Belinda Suffering from this Intense Pain

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 who are 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 Cervical Fusion she needs as her spinal cord & nerve roots are being compressed. (This requires a special technique given her EDS or faulty connective tissues.) The 2nd Surgery will be 2 months from the 1st (Late August/Early September). Belinda's CT Scan with reconstruction is scheduled for when she'll be in NY 6/16. This will reveal if she also has Eagle's Syndrome (or a hybrid of such which is found in the Chiari/EDS population and is much more complex). If positive for Eagle's Syndrome, she will need to return for a 3rd surgery (her 5th Chiari/EDS surgery). 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. Will you help end Belinda's suffering and help save her life?
Belinda says that, "every penny donated is deeply appreciated, prayed over and will be used wisely towards saving my life. I beg you to consider praying over what you can afford to donate."
These are the 3 ways to donate.

1.) PayPal. Send Money to a Friend through http://www.PayPal.com to: bellafundraisers@gmail.com
Belinda will receive 100% of your donation without any fees taken if a donation is sent this way. Please be certain to copy and paste the above email address and/or double check that it matches before sending the payment.

2.) YouCaring. You can click on the "Donate Now" button below or click on this link: http://www.YouCaring.com/HelpBelinda
YouCaring offers an option for you to pay their fees; however, a small fee will be taken out of the donation for WePay to process the payment.


3.) Postal Mail. You may also mail donations, cards and such to:
Belinda Fant-Harrington
PO BOX 2184
Woodstock, GA 30188-1376
USA

Please contact bellafundraisers@gmail.com for any media requests, words of encouragement or questions. We thank you so much for your continued prayers, love and support for Belinda and her family. May God bless you for your kindness. Sincerely, "#SaveBraveBelinda"

Belinda so nauseated from head pressure, brain stem compression and pain she can't leave the bathroom.


Chiari Malformation Awareness


Belinda has been very open and raw with sharing her journey. She prays that it will bring awareness to Chiari Malformation, Ehlers Danlos Syndrome and CranioCervical Instability along with the intense pain it causes not only for those suffering, but their family.

Belinda watches her dear Chiari Brothers and Chiari Sisters die regularly from:

  • Lack of proper "pain management" for an unbearably painful condition which leads to suicide.
  • "Loneliness" due to family and friends no longer being a part of their life as ones ability to keep plans becomes nearly impossible since the pain and symptoms are so unpredictable. Invites stop coming, the phone no longer rings, no one comes to visit or check on them until one feels all but forgotten and non-existent which leads to suicide.
  • "Lack of education in the medical field." It is all too often that Belinda has to not only spell her condition(s), but also explain exactly what they are to medical "professionals" from nurses to doctors, Orthopedic Surgeons to Emergency Room Doctors. This leads to frustration and hopelessness and some take up to 20 years to be diagnosed leading to suicide. Inexperienced surgeons perform the decompression incorrectly leading to death. MRI's aren't always read correctly leading to death by brain stem compression. 
  • Complications due to "undiagnosed co-morbid conditions" like Sleep Apnea or in Belinda's case, Ehlers Danlos Syndrome causing CranioCervical Instability which can be fatal. 
  • "Surgical Complications." There are risks with any surgery: infection, coma, stroke, death, etc.