Wednesday, April 20, 2016

Update September 2020:

Dear Sweet Friends,

I have a rare combination of complex medical issues that have caused unbearable pain and debilitating issues. It cost me my career, my independence, my ability to support myself and everything I knew as me— But, God has sustained me. While raising my beautiful children, He brought me through 4 - Lifesaving Brain & Spinal Surgeries by a Specialist out of state that I couldn’t even afford. Not once, twice or even three times... God sustained me through 4!!! (((The pictures speak louder than words, so feel free to scroll down to see previous surgeries. No, I am no longer married and some of this site has been written with help by my sister.))).

Unfortunately, I can’t turn to just any Neurosurgeon to perform my surgeries and I need another surgery due to unbearable pain in my neck/thoracic area, spinal cord compression, nerve pain/numbness and tingling running down both arms. Basically, failure/collapse between the hardware holding my skull in place and the hardware in my lower neck. This requires socmeone well skilled and extremely knowledgeable with the rare combination of issues I have. There are less than a handful in the entire world. One in Spain, the one I use in NY. No one wants to touch another surgeon’s work, especially when it comes to my myriad of issues.

These include:
Chiari One Malformation (Brain herniates into spinal canal disrupting/stopping flow of Spinal Fluid. Compressing Brainstem + Spinal Cord. = Extreme Neurological Issues + Unbearable Pain + more

Ehlers-Danlos Syndrome (3 genetic types + hypermobility) <- Imagine sewing wet toilet paper together. Healing Issues. And I’ve had 1 emergency surgery due to a non-specialist in EDS performing my 1st brain surgery. This elasticity within the muscles allowed for my skull to slide on the axis compressing the brainstem from the opposite side as Chiari Malformation.

CranioCervical Instability (Skull lifted and screwed on by hardware to prevent paralysis, death, etc... while brainstem is compressed.

Spinal Instability - Same, imagine spinal cord compression, herniated discs, impinged nerve roots, bone Spurs, radiculopathy (nerve pain, contracting muscles nonstop)

Which is even complicated further by damage to my Pituitary Gland which led to Adrenal Insufficiency and several life-threatening Adrenal Crisis situations. One led to a NDE (near death experience) last November when I spent Thanksgiving being resuscitated. Note: Surgeries for these type of rare issues typically require: “out of the box thinking,” and aren’t covered 100% by any insurance. Most are out of network for this reason. Trust me when I say that my surgeon + his office + my family and I have thoroughly researched coverage in every way possible. Keep in mind that I have to travel out of state and stay there for a few weeks. But, I trust God wholeheartedly and will keep my faith in Him. There is nothing leftover once basic bills are paid from SSDI towards all of the out of pocket and traveling expenses to NY for surgery #5. I thank God for a roof over my head and for meeting our needs. I will post a fundraiser with more information as soon as I have more of my surgery details confirmed. I appreciate your prayers, love and support!

God Bless You!
Belinda



Please note: Everything below is from a couple years back. I am leaving it because these explain a lot about what I have gone through. I am no longer married though. God bless you all for your prayers, love and support.

Belinda has Chiari Malformation, Ehlers Danlos Syndrome (EDS), CranioCervical Instability (CCI) compressing her Brain Stem, Multi-Level Cervical Discs compressing her Spinal Cord & Nerve Roots, Neurogenic Bladder Dysfunction, a Retroflexed Odontoid, Dysautonomia (P.O.T.S.) and many more related conditions. Her conditions cause her unbearable pain, suffering and discomfort to the point she is primarily bedridden which significantly
 affects her quality of life. She is in a dangerous position, at risk for paralysis and death as she is in need of a costly life saving surgery out of state.

After two brain surgeries, Belinda thought her horrific battle was almost over, but it had barely begun. She developed a dangerous complication of Chiari Malformation and Ehlers Danlos Syndrome known as "CranioCervical Instability" or "CCI" for short. Basically, Belinda's Brain Stem is being compressed or "squished" by bone every time she moves her head or even sits upright. The Brain Stem is the stem-like part of the base of the brain that is actually connected to the spinal cord. It performs all the vital functions that we don't even have to think about that keeps us alive. It controls the flow of messages between the brain and the rest of the body, and all basic body functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and whether one is awake or asleep. This is an excellent illustration of what happens to Belinda's Brain Stem with every dangerous movement which puts her at risk for paralysis and death.  

Source: medscape.com & Neurosug Focus



 Will you please prayerfully consider SAVING BELINDA'S LIFE? Not only will your donation make a difference and give three beautiful children their Mother back, you will be Saving the Life of someone at risk for Paralysis and Death. Surgery #1 is 6/21/16 (traveling from GA to NY) for the CranioCervical Fusion to stop Brain Stem Compression. Surgery #2 will follow 2 months later, again traveling from GA to NY for the Cervical Fusion to stop Spinal Cord & Nerve Root Compression. A complete breakdown of expenses and further information regarding the surgeries and desperate need are detailed in the YouCaring Fundraiser for Belinda. (link below).

We thank you so much for your consideration in donating to SAVE BELINDA'S LIFE and for your prayers. It is Belinda's faith that has sustained her throughout her suffering and she is hopeful that God will speak to your heart as she yearns to end this pain and live life again.
You may donate through the following ways: 

PayPal to bellafundraisers@gmail.com
Amazon Wish List: 

::: UPDATE :::



My dear sister Belinda desperately needs your help to regain her life, prevent paralysis and end her 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 Chiari/EDS related surgery). She is actively recovering from Part #1 of her 3rd out of state, Major Brain, Skull & Spine Surgery thanks to the beautiful giving hearts who came together to save her life and stop her Brain stem compression. It lasted 10 hours on 6/21/16 and she spent an unexpected 4 days in ICU. She has to fly back out Sunday, 9/18/16 to complete what was started to stop her spinal cord from being compressed (squished), preventing paralysis, urinary/bowel incontinence, permanent neurological damage and to end the horrific pain she has battled for so long that feels as though her ribs, spine, shoulder blades, neck and arms to fingertips are on fire from nerve pain. Both part 1 and 2 are out of state, out of network, extremely necessary & very costly surgeries). She arrives early for various imaging and pre-op testing and the surgery will be 9/22/16. Please prayerfully consider giving any amount God lays on your heart and/or keeping The Harrington's in your prayers. God Bless.