When a Chiari woman passes away it changes so much for so many.

It leaves a hole in the hearts of the Chiari community because, even as dysfunctional as we are sometimes, we know we’re all in this together!

  • We know what it’s like to have conditions that so few understand, including our doctors.
  • We know how humiliating it is to watch our bodies change and our muscles deteriorate as we fight just to hold up our heads, even for just a few hours a day.
  • We know what it’s like to have our symptoms and pain consistently dismissed as psychosomatic.
  • We know what it’s like for doctors to say how easy the surgery will be only to find out that they had no clue of what they were talking about.
  • We know the heartbreak we feel when those we love the most choose to believe our doctors instead of us.
  • We know what it’s like to be told that the surgery cured us, while everything in our heads and necks seemingly rebel in disagreement.
  • We know what it’s like to have to fight for every aspect of our treatment, from imaging to specialist, and still have help denied to us.
  • We know what it’s like to have to find strength through the pain each day and still try and carry on the best that we can for those that we love so much. We long more than anything to get back to who and what we once were. To run and jump and enjoy life with those we love most, but the pain is too overwhelming. The truth is that those times that we did try left us in even more pain; so, we are forced to learn to choose what we do wisely.
  • We know the genetic nature of what we have, even if our doctors don’t, and we all long to figure it all out and fix this very broken medical system that relies on information that is centuries old, before our children and their children are forced to face what we face.
  • We know what it’s like to live in fear of leaving all those we love, as they are our reason for living.

It leaves a hole in the hearts of her family that should be respected.

To them she is so much more than a Chiari Woman, she is my wife, my mother, my daughter, my grandma, my sister, my aunt, and the love of my life.

Chiari didn’t just rob their loved one, it’s robbed the entire family for years.

They too have longed for what was and often cried behind closed doors for all that likely would never again be.

Her husband has had days where he was so petrified at the thought of losing her. Sometimes that fear manifested as anger and frustration, but it wasn’t her that he was really mad at; He was mad at the Chiari that was taking his wife from him. He regretted those words from the very minute that he gazed upon her eyes as she heard them. He couldn’t make her forget those words, they pierced her soul too deeply, so he internally committed to just try and show her why he loves her. Despite his frustrations with the situation, he admired this amazingly strong woman who was facing more pain than he could ever understand. He’s cried out to God privately for this soul mate that he committed to so many years ago. He feared losing her and he did not know how he could ever hold everything together like she did, but he had to try because there was so much was on his shoulders. He never talked much about the weight he carried in it all, because he knew what she was facing was already more than she could handle. So, he learned to grieve as silently as he could – to understand what he could, to empathize as he could, to remain as strong for her and the family as best as he could.

Her children have learned to grieve in silence as well. They learned to face life and all the obstacles they faced without making waves at home. How could they? They saw the pain that flared when things had stressed her in the past. They didn’t want to cause that again. They longed having the mom that they used to have, the mom with the strength to climb every mountain with them, the mom that made every challenge in life seem conquerable. They admired her strength and never understood how they could admire so much in her yet hate the fact that she wasn’t always there for them anymore. Even when she so desperately tried to be there the brain fog often dominated and took over the conversation entirely, this conversation that she probably wouldn’t remember for long. They resented her for it but knew that it wasn’t her fault. Like everyone else that loved her the most, they said so many things that they regretted. They knew that they often came across like they hated her, but the real truth was there was no one in the world that they longed for more. They’ve always hated seeing her in pain, yet her pain served as a constant reminder of the future that they feared in their future. They remember when she told them about the hereditary nature of the genes passed on to them, with tears in her eyes. Would they have what she had? Would they become as symptomatic? Would they have the courage to fight it as valiantly as she did? Should they have children one day? The reasons for concern were endless.

Depending on when she became symptomatic, her parents have likely spent endless days and nights in hospitals and emergency rooms. They’ve spent years learning all they could and even learned to recite her diagnoses with detailed explanations because they’d became so accustomed to these conditions that so few doctors could pronounce, much less treat. For years they made sure to always have her complete medical chart in hand with official documentation, in case they were challenged by a medical professional or anyone dared to call their daughter “a drug seeker” or “psychosomatic.” They spent countless hours trying to dull the tortuous pain they saw her go through, and spent many more hours researching creative home remedies to give her a sense of relief, even if it was only momentary. There were times they prayed for God to just go ahead and take her, so she wouldn’t be in anymore pain; and then felt guilty for even thinking it. Then one day the screaming stopped, the pain was gone, but with it so went their daughter.

As Chiarians, we all deal with thoughts of death more than “normal” people and “normal” families. We go from surgery to surgery knowing that this might be the surgery that ends our fight altogether, yet we hold on to hope that it will be the surgery that helps us to be all that we’ve yearned to be once again. Our community has found strength in our unity. As we remember those we’ve lost and face our fears about our morbidity, let us continue to unite to change this for us and our future generations that we love so much.

*This article is dedicated to all the Chiari Angels and their families, as well as those that are still fighting the fight. Hold your families close; forgive quickly and as often as necessary. We never know how much time we have and we usually never really know how much we’re truly loved until it’s too late.

**Note: This article was not to leave out all of our valiant Chiari brothers fighting the fight, it was just easier to write from one point of view.

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During my pregnancy I remember being very unwell, writing in my journal, “there is something wrong with pregnancy, I know something is wrong with my baby”, at only 10 weeks gestation; proving that a mother always knows. At around 30 weeks gestation my unborn baby started to get chronic hiccups followed by trembling, lasting several minutes and several times per day. I begged doctors to run further testing, pleading something was wrong but it all fell on deaf ears. Baby Eric’s heart rate was strong and steady, my fundus was measuring right on time with gestation, so my concerns were dismissed. At 36 weeks gestation, I started having consistent and lasting contractions. After several hours I proceeded to the ER department, concerned I was in preterm labor. Stress tests were run, and the nurses dismissed me, asking me to come back the next day for a follow up. While running a stress test the following day after food, juice and changing positions, the doctor was called as Eric didn’t have enough variables in his heart rate. I can still hear the Doctor yelling at the nurses asking why I had been sent home the night before demanding them to get on the phone with the hospital in the next community and to make sure a neonatal team was on standby, because they would be expecting a new Mom tonight. I was terrified, as all my worst fears were coming true. I was transported immediately, where I was met by a huge medical team. Everything was moving so quickly, myself and my partner were in shock and terrified not knowing what would come next. After an emergency ultrasound, Doctors explained that we had a very tiny baby with a great deal of amniotic fluid and something was seriously wrong with my baby; exclaiming that an emergency C-section would have to be performed. At this point we didn’t understand what this could mean, or why I had so much amniotic fluid. This was why my fundus was measuring well and everything went undetected. My partner and I were living every parent’s worst nightmare. Thinking back, I recall crying and holding my boyfriend’s hand as they carefully lifted a very tiny completely blue baby hand from my stomach. When we all saw my breathless baby like a flip of a switch the operating room became chaotic. Doctors were in a mad rush trying to resuscitate my baby, who had no vitals and wasn’t breathing. I was hysterical, so the doctors sedated me. My boyfriend was becoming increasingly agitated, so they demanded that he leave. I can still hear the nurses voice yelling at him, “you are taking up time we need to save your baby, you need to trust us and cooperate, OUT”, before the anesthesia flushed into my system.

After several hours I regained consciousness, family and doctors surrounded me trying to explain what they knew about baby Eric. They explained Eric and I would have to be immediately flown out to a larger center where they could properly care for my baby. Eric couldn’t support his own airway, he couldn’t suck, swallow, or move due to hypertonic muscles. He was having several seizures, all pointed to brain damage. At this point they had no idea what was wrong and could not conclude whether my baby would live. I recall saying I wanted to go see my baby and trying to get up out of the hospital bed, but the nurses told me I couldn’t see him, because I had just gone through a major surgery and he was too sick; we both had to rest for transport. When the nurses told me that, I flipped, telling them that come hell or high water, I was going to see him. I got as far as swinging my legs over the bed before I vomited everywhere. The nurses finally clued in that I was going with or without their help, so they laid me back down and wheeled me to the NICU to see him. I couldn’t even see my baby for he was so small and leads encased his body where he layed. They had his chin strapped up as every time it fell backward it would close off his airway leading to oxygen desaturation. They didn’t have the resources to intubate a baby at this hospital, so they decided to fly us out to Vancouver Children’s Hospital.

The nurses and doctors kept me sedated for the first 4 days of being in Vancouver as every time I came to, I would start screaming for my baby and they would find me wandering the halls trying to find my baby. On day 4, they finally let my partner wheel me down to the NICU to see him. It was the scariest place I had ever seen. Rows and rows of incubators filled with tiny preemies with all kinds of machines keeping them alive. The nurse told me Eric was the biggest baby they had at 4 lbs. 11 oz. This gave me false hope, believing if he was bigger than all the others, he must have a fighting chance to survive. After several days of Eric in the NICU covered in wires, leads, and intubation tubes we still had no answers as to why our baby was born so ill. Eric was having up to 35 or more seizures per day, he was poked and prodded many times a day and underwent several tests; spinal taps, MRI’s, CT Scans and had several neonatal experts tirelessly working to find the cause of his many issues. Any parent who has been through this knows and understands the emotional roller coaster that comes with this experience. One day they tell you that your baby is improving, and they say he will beat this battle, and the next you’re told he wouldn’t survive the next 24 hours telling you to say your goodbyes; waking up all hours of the night, if you sleep at all, to pump your milk for a baby that isn’t there. You are walking to the hospital in the middle of the night just to be next to him because you can’t bear to be away. You are begging, pleading to God for your child to be healed. After 3 weeks they finally let me have skin to skin cuddles and started teaching us how to care for him. This isn’t the way it’s supposed to go; you’re supposed to go to the hospital, have a baby and take them home, right? Instead you walk around numb, you don’t remember the last time you ate, or showered, you just feel like you’re having an out of body experience, as if you’re watching this happen to someone else. You’re scared to leave their side for even a minute because what if it’s that minute that he leaves this world and you’re not there?

We wouldn’t allow for anyone else to care for him, we did all his range of motion therapy, we did his bath time, and we did all his personal care alone because if a nurse or doctor touched him in a clinical manor he would be riddled with more seizures. After a month, the nurses started insisting we start taking better care of ourselves, so my boyfriend and I started alternating night shifts. My nights alone with him were my favorite, I would hold him all night and rock him. He would look up at me with his deep blue, soulful eyes and tell me all the secrets of the world. He had the oldest spirit I had ever saw, full of wisdom and love.

After about a month we had a meeting, and it was then that the doctors told us we had a failure to thrive baby, his cells didn’t migrate to the right place at the right time, that his cerebellum and brainstem were severely underdeveloped. The statistics 19 years ago was that one out of one million babies were born like this and they had yet to find out what caused the illness. Our baby couldn’t regrow the parts of his brain that didn’t develop. He had gestational arrest at 32 weeks, he had scoliosis, spina bifida occulta, epilepsy and severe brain damage. Our child would never move on his own, suck or swallow or be able to interact and that he would most likely die of aspiration pneumonia. He would live his life in hospital more than out. I have worked with special needs adults with this type of quality of life, I could play the tape to the end, and I knew hanging on to him would only be for selfish reasons. I understood that my baby was in pain, I could see in his beautiful blue eyes, as I said before, a mother always knows. It was at this time Eric’s father and I decided to sign a” Do Not Resuscitate” order. It was without a doubt the single hardest thing I have ever done.

We called our family to let them know of our decision and if they wanted an opportunity to say goodbye to Eric, they would have to travel down to do that as extubating was set for a week away. The doctors were certain he would pass away shortly thereafter. The family gathered, and we had our son baptized, pictures were taken, everyone had time alone to say what they needed to Eric, and he was extubated. Eric surprised us all; he just kept right on breathing, and he could support his airway after all. The hospital put us in a family room with our son, so we could spend as much time as we could with him in a less clinical environment before he passed.

Within 2 weeks, it was clear this child was a strong fighter and wasn’t ready to give up quite yet. We had another meeting and it was decided we would take him home. We wanted his big sister to have time with him and show him what a home was like. We took a 2-week crash course on neonatal nursing. We had to learn how to do his lung physio, how to suction him, and how to work a feeding pump and so much more. Eric was brought home February 10,1999. We did his 24-hour care until March 9th when he took a turn for the worse. He was diagnosed with aspiration pneumonia. This left me in a panic; I wasn’t ready to let him go, and I wanted him sent back to Children’s Hospital and be treated. We had an amazing Doctor who came to the hospital and took me for a walk to discuss why we made the DNR code and why we made the right choice for our son. I took my son home that day knowing we were running on borrowed time. His breathing became very shallow, he turned blue from lack of oxygen and on March 11, 1999 at 3:15 am our darling boy went home to be with his creator. The year following is a fog, I remember very little. I was deeply depressed but I knew I had to keep moving forward for my daughter, she needed me. I know she was hurting too but I was so consumed with my own grief, that I couldn’t reach out to her, I couldn’t handle both her grief and mine. My daughter and I have had to take a lot of time since to heal together. With that being said, the pain of losing a child is not something that you can run away from or attempt to forget; I relive my sons small time on this earth every single day.

Fast forward to 2005, I became very ill. It took 13 years for me to find out I had Chiari 1 Malformation and EDS and another 3 years too learn I too had Spina Bifida Occulta and Tethered Cord. I started to learn all I could on these conditions and joined many support groups. I was reading up on all the different types of Chiari when I came across Chiari Malformation type 4. It was described as one of the rarest types, when a baby is born with an underdeveloped hind brain or cerebellum. WHAT?! Did I just stumble across the reason as to why my son was born sick? Did I just stumble across the name of the disease that took my son from me? I printed out the info for Chiari 4 and Eric’s medical info and took it to my Doctor. The doctor and I had a long discussion and he agreed this was what my son had all those years ago, I just don’t think they called it Chiari 4 back in 1998. I was relieved to know, but angry. It took 18 years for me to find out what had happened to my darling baby and that was after all, genetic. They ran genetics on Eric but told us it was negative. Little did we know then that h-EDS was what I had and that they do not know the genes that cause it. I also learned many of us suffer from the MTHFR Gene where our bodies reject folic acid and B12, two vitamins I had always been deficient in and it can cause neural tube defects in babies.

In closing, I would like to say, no parent should have to wait 18 years to find out what took their child from them. As a parent, no matter how your child passes, you will blame yourself. I had to work through some pretty hard moments and learn to forgive myself for this unknown genetic disease that not only took my son Eric, but now has also made my oldest daughter Tricia ill. This is unacceptable to me. This is why it’s so important that we raise awareness and educate our doctors, so no mother or father has to wait 18 years to understand their child’s conditions or death. This is way the work that WTF and Chiari Bridges does is so very important to me and why I am always asserting that we be tested for all comorbid conditions. Rarely is Chiari just Chiari, so please take the time to undergo all the proper testing for all the comorbid conditions.

 

Eric Michael Nault November 28th, 1998 – March 11th, 1999.

Thank you for taking the time to remember my dear Eric with me,
Amy Schmalz

Zona McGee was blessed with a vibrant and beautiful little boy on July 2nd, 1993. She named him Ryan Andrew and fell in love with his sweet face the second she first held him. He looked just like her! Her husband, Kevin, and daughter Crystal, eight-years old at the time, were over the moon as well.

Zona had been battling a genetic kidney disorder her entire life, causing both of her pregnancies to be considered high-risk, so when her second delivery and birth went well, she was elated. She counted her blessings and relaxed into the day-to-day tasks of being a young mother. Her life was happy, and she adored her children very much.

By her beaming account, Ryan was a gregarious and charming little boy. “If there was something to explore, he would be all in it,” she told me. He had more energy than she knew what to do with and she kept him busy with stimulating activities and adventures. He was sweet, kind, and loved to make people smile, especially his sister, with whom he shared a unique bond.

Watching her children grow into responsible young adults made Zona immensely proud. She had many wonderful memories of her family through the years. Because her kidney disease is genetic, and other family members suffered as well, she had worried that her children may inherit the gene, but neither did. Ryan was a very bright, energetic, healthy child. Throughout his childhood, Ryan’s well-child checkups always received A+ reports.

However, when he was 15, his physician noted an incidental finding of minor scoliosis. Because Ryan did not complain of pain, the doctor decided to just keep an eye out for future changes. Ryan’s teenage years were happy. As he matured, his high energy settled down, and he became more introspective. He often spent his free time gaming on the computer, broadcasting on his YouTube channel, playing guitar, and enjoying life with his friends and family. Music was a major part of his world. He loved everything about it: listening, writing, and playing. He often shared his songs and favorite bands with his proud family.

Ryan was a good student and took a local job after graduating from high school. He loved working and earning his own money. By all accounts, Ryan was a completely normal, functioning, and on-target, young adult. He was doing what most recent high school grads do – living life, having fun, and trying to decide what profession he might go into.

He was also heavily involved in organ donor awareness. Although Zona had been doing remarkably well for years, during this time, her condition began to rapidly decline, and she was put on a kidney donor list. She had a calling to act and started a blog, which led to a passionate fight to spread awareness about the importance of donating organs and tissue. Ryan fought alongside her and made the decision to become a donor himself. Little did they know, Ryan’s decision would end up saving many precious lives, including his own mother’s.

In May of 2013, Ryan began experiencing minor, intermittent headaches that were uncomfortable, but not debilitating. Zona made the logical assumption that Ryan was not wearing his glasses often enough. She continued to encourage him to wear his glasses, but the headaches became more severe over the next month. He visited his doctor who also believed it was due to his eyes, and advised Ryan to take Tylenol for the “migraines.” Stress was also considered, but the doctor was not a bit concerned.

Sadly, glasses and Tylenol did nothing to prevent or relieve the pain. His headaches were constant and progressively painful, making it difficult for Ryan to function. He was in agony, but he tried to minimize his suffering as to not “burden or stress out his family.” The doctors assured them that “nothing serious” was going on with him. The doctors were horribly premature in that assessment of Ryan’s symptoms.

One Friday, during a particularly bad flare up, Zona became very concerned that Ryan may have been suffering from a sinus infection and planned to take him to a walk-in clinic that following Monday. He never made it to that visit. On Sunday, May 12, 2013, Mother’s Day, Ryan was stricken, out of the blue, with an unbearable headache. He also complained of a stiff neck and collapsed in the bathroom. Zona and Crystal, who both heard a “thud” found Ryan unresponsive on the floor, and rushed him to the hospital.

They waited anxiously, for tests to come back, wondering if Ryan’s symptoms pointed to meningitis. The doctors mentioned that he, “May have a brain tumor”, before all the results were back. The family was terrified. However, after an MRI scan and lab results were completed, the doctor came in and told Ryan that “luckily” it was not a tumor or bacterial brain infection, but that they had found a Chiari Malformation.

Zona anxiously queried, “A what?”

Her question was ignored, as her child was an adult. She asked again, but the doctor turned from her and explained the test results to Ryan directly. He told Ryan that a Chiari occurs when the brainstem becomes herniated, but they could easily “fix” it with brain decompression surgery. He also told him that unless he agreed to surgery, his headaches would worsen, and he would just keep coming back to the E.R. He was presented with consent forms and was informed that they wanted to do the surgery the following morning.

Ryan had never dealt with illness or pain and he was terrified. After consulting with Zona, who felt that they should take some time to get more information, Ryan made the decision to undergo the operation. He just couldn’t bear the pain any longer; it was that debilitating. They were promising him relief and his symptoms were so severe, he trusted them and signed the consent forms. Zona was beside herself with worry. She thought to herself, “We just found out that he has something I have never even heard of, and they want to saw through his skull? I need more time!”

But she didn’t have time. She also did not have the respect of the doctor simply based on Ryan’s age. This infuriated her, as while Ryan was over 18, she felt that his family should be able to have their questions answered as well. But she didn’t fuss. They were coming to prep him, so she hid her fear and frustration to be strong for her son. When they wheeled the gurney away, she had no idea she would never see her son the same way again.

During Ryan’s first surgery, a temporary shunt was placed in an attempt to drain excess cerebrospinal fluid. When that failed, the surgeon made the call to do decompression surgery. Ryan went into this operation a very healthy and fit young man, but he came out with obvious signs of brain damage. Though it was clear that Ryan wasn’t well post-op, his family never again saw the surgeon who performed his decompression. There was no follow-up.

Over the next few months, Ryan was rushed to the E.R. on several occasions due to cyclic, intractable, vomiting along with severe head and neck pain. During these dozen-plus visits to the E.R., he was turned away multiple times and labeled “drug-seeking, weak, and dramatic.” This was a slap in the face, as Ryan was advised to blindly have the surgery to prevent him from returning to the E.R. This painful irony was not lost on Zona, and it only added to her trauma and confusion.

Ryan was having seizures, yet he was told he was faking them. When Zona protested, she was told by a nurse entrusted with Ryan’s care, “Your son is not having seizures. What is wrong with you? Do you want him to have seizures?”

In all the E.R. visits, there was ONE brain scan. The family was told the surgery was successful and whatever was going on, if anything, was completely unrelated to his decompression surgery at their hospital.

On the last visit to this particular hospital, the chief neurosurgeon refused to treat him neurologically and ordered a psychiatric evaluation instead. After speaking with Ryan, the psychiatrist said, “I do not believe you are crazy, but you are a bit of a wimp.”

Zona was livid and chased everyone out of his room. She then immediately took Ryan to another, smaller hospital. It was obvious to the triage nurse that Ryan was in serious trouble. He was gaunt, having lost 30-plus pounds in three months. He had nystagmus, and his vital signs reflected the pain and distress he was experiencing. Scans showed brainstem slumping and his neck, literally, had no support. Zona was told that “too much bone had been removed,” and that he needed emergent intervention.

The doctors recommended immediate surgery to correct the horribly botched decompression. However, they suspected that he had meningitis, due to a fever, so they wanted to confirm and aggressively treat that before opening him back up. They began I.V. antibiotics and Dilaudid.

Again, Zona helplessly waited by his side for more test results. She was slightly relieved that there was finally a team of people looking after her child who believed them, but as she watched her child dozing from the pain medication, she barely recognized him. He was thin, with hollow, sunken eyes, and his weak, frail arms were drawn to his chest. Hands clenched in fists, he laid in a semi-fetal position. She wanted to know how this had happened. It had been a surreal, awful three months, and she wondered if there would be enough time to save him. Tragically, there was not.

Ryan suffered a fatal seizure the following morning that collapsed his brainstem, and he never woke up. He was pronounced brain dead, August 11th, 2013.

After Ryan’s death, it was discovered that he did not have an infection at all. According to an independent attorney’s assessment of Ryan’s medical records, there were at least nine opportunities for the health professionals, whom Zona trusted, to save Ryan’s life. The investigator called Ryan’s treatment barbaric and inconceivable. He, like all of us, want to know how this young man was so callously discarded and left to suffer until his untimely death. That question will never be answered. It is incomprehensible how the “professionals” who did have contact with Ryan, not only shunned him, but covered up evidence of medical injustice in order to protect their establishments, surgeons, and other health care workers.

Ryan’s severe, post-decompression, decline was obvious. Ryan was aware that he was in critical condition. He knew he was not going to survive. Before he died, he told Zona, “Make sure everyone knows what happened.” She did that and more.

Zona wanted the world to know who Ryan was and about the loving gifts he left behind. The medical establishment failed Ryan and his family, but he remains a true hero. Upon his death, several families received the gift of life through Ryan’s organ donation-including his mother, Zona. The day after Ryan died, she was in surgery receiving her child’s kidney.

There are times when Zona, naturally, wondered what she could have done differently, but the answer to that is simple: Without advocacy and awareness, hindsight is 20/20. There was nothing more she could have done. She tried everything in her power that she knew to do at that time. Because this was being reiterated by the doctors, she had faith that he was in good hands and that he would recover fully. There was no playbook she could consult on how to advocate for her child. She was in a surreal state of shock, disbelief and fear. She had no frame of reference to show her that the medical professionals in charge of Ryan’s care were terribly wrong, and negligent in the very least. She had to believe the doctors whose opinions and advice we are taught to trust. After all, doctors are the ones who have the medical degrees and they know best, right? No.

From the time Ryan was decompressed to the day he died, Zona made several calls to get Ryan help, but nobody would listen! Zona’s desperate attempts to alert the medical staff of Ryan’s worsening condition were to no avail. Nobody helped! Nobody cared! Nobody listened.

Zona took the pain from this unimaginable nightmare and turned into an unrelenting drive to educate other families who are caught up in the trap of medical injustice. She became a fierce advocate for patient safety and rights with the hope that no other child will suffer the way Ryan did. She also helped parents navigate the medical system so that they may learn from her experience. She vowed to work feverishly to bring about awareness and authorized a documentary about Ryan’s life and struggle with Chiari Malformation.

On Sunday, May 14th, 2017, Mother’s Day, Zona McGee, succumbed to metastatic lung cancer that she acquired from the anti-rejection drugs she was given to save Ryan’s kidney. Her death is a tremendous loss to our community. Her family and friends miss her more than any of my words can express.

Zona’s worst fear was that Ryan would be forgotten and that her promise, to let everyone know his story, would end with her life. I promised we will never let that happen. We never will.

Rest in peace, beautiful angels.

Please support Zona’s Visions:

Zona’s Blog Zona-Life On The Waitlist

Ryan’s Awareness Page: Ryan’s Voice Chiari Patient Awareness

Please support the documentary Writing For Ryan and view the documentary trailers and share the website link as well.
www.chiaridocumentary.com

Gianna Soares
Writing For Ryan
Updated 01-21-2018
For the exclusive use of Chiari Bridges, as per Zona’s request.

Bridges are built as a means to assist people in getting over the things that obstruct their path. We are constantly facing obstacles when it comes to our health, so we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. Our goal is to provide information, substantiated by published studies, in a way that is easy to understand. We encourage readers, to not only read our articles, but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. As many of our authors are patients as well, all authors sharing original pieces will be writing under pseudo-ghost names, to protect them from being black-listed by their doctors. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical from a qualified medical professional. The information provided on our website is strictly for educational purposes, in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those in need of answers, that it may increase your knowledge and guide you in conversations with your doctors.