Albey's story

Albey was just 3 when we found out he had Chiari Malformation. He began to loose functions like walking and doing normal 3 year old stuff. He was always so tired, not eating, couldn’t potty train no matter how hard we tried . Albey was always having headaches, body pains and sensitivity to lights. I had no clue what was wrong i thought he was just sick. Until his cousin and aunt came into town and meet him for the first time and they instantly knew something was not right. They told me about Chiari and to get my son checked as it was Hereditary in their family. So not knowing anything about Chiari took my son to see a Neurologists where they did an MRI and diagnosed him with Chiari. I had my son tested in July 2022 and was told he needs surgery asap. I was given one month to process everything the doctor told me and get ready for a full decompression surgery. Albey had surgery September 2022. He has been in physical therapy for 2 years on and off to help with walking, running and regain his balance without falling since surgery. Albey is almost 2 years in recovery from his first surgery and he is now having all the same symptoms he had before his first surgery. His cerebellar tonsils have moved again as well. I am still trying to understand Chiari Malformation while dealing with the reality of my son going to need a 2nd surgery very soon. He was a normal 3 year old boy and now is almost 6 and has to deal with Chiari every day and we never know what each day will look like. I as a mother hate that my son has to go through this.

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Kyra's story

My daughter Kyra was a normal 9 year old girl. She was a bubbly, happy kid that loved to play and do gymnastics. One day, she developed a "headache". This headache presented as extreme pressure in her head. Nothing could elevate it. We didn't know what was happening. Once the pressure started, it never stopped.

I began to get very worried and we decided to take her to the ER. We were completely written off. The did not do any imaging, and told me that we should see a neurologist for pediatric migraines. I fought, begged, and pleaded to get her into a neurologist that same week. We had an MRI, which is how we found out she had Chiari. The pressure in her head was from the compression on her spinal cord.

We saw a neurosurgeon and she was scheduled for surgery 17 days later. My daughter had to endure this pain for 35 days. Not a single break. Day after day I had to witness the strain Chiari out on her, knowing there was nothing I could do to stop it.

Thankfully after her surgery her pressure is gone and she is now feeling much better. There were a few complications , that were all resolved. Unfortunately, she still has health issues that we have to solve. As we have learned, Chiari isn't always "just" Chiari, sometimes it likes to bring friends to the party. She has been able to start getting her life back. I see smiles on her face, and she can run around and play again. This journey can feel so dark, but there is finally a light at the end of the tunnel.

I will forever be proud of my brave little girl. She never gave up. She fought through the pain. She is a Chiari Warrior.

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Ollie's story

Oliver was a perfectly healthy 10 month old baby. All of the sudden in May he started getting really fussy would crawl or cruise anymore. In June he started to get worse, crying all the time and when he wasn't crying he was sleeping for 30 min at a time 23 hours a day. When he was awake he would cry in my lap or just lay there. I took him to three different doctors. First said he's teething and some babies are just grumpy, second virus, third ear infection. He was 10 months and he couldn't eat food at all without puking or gagging. He could no longer nurse without gagging. He finished his antibiotic for the ear infection and he was still so wobbly and just sick. I was like screw it there is something wrong, so I took him to the emergency room. The first emergency room said they were very concerned with his symptoms and his breathing (because it had been slow). They sent us via ambulance to UK pediatric hospital. There they did an EEG and found nothing. Then finally after 4 days there they sedated him for his MRI and spinal tap. After that they came in the recovery room and told us he had Chiari but it wasn't what was causing his symptoms. But they were sending us to the PICU because his breathing was only getting worse. We get to the PICU 20 minutes later. The doctor there said he didn't understand why we were there and he was going to send us back down to the floor. 10min later they were putting him on a ventilator because the spinal tap had caused problems with the Chiari. The immediately sent us to Cincinnati Children's Hospital via helicopter. He stayed on life support for 3 days when the finally weened him off. His official diagnosis was: Complex Chiari Malformation, hydrocephalus, and basilar invagination. July 2nd Dr. Vadivelu did his decompression surgery. It went great and we got to go home 4 days later after 2 weeks in the hospital. He is so much happier and smiling all the time now. AND LOVES food now. He will continue with speech and physical therapy. He will be in his neck brace for a year (till he is 2) and have another surgery for the basilar invagination. But for now, he is happier.

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Wade's story

My son Wade was born October 16, 2000, weighing in at 7lbs. He was discharged from the hospital, seemingly as a healthy boy. However, as time passed it became quickly apparent that there was something very wrong. Wade would cry constantly in pain, and wasn’t growing. I took Wade to the pediatrician, and he brushed it off as teething. I gave him the prescribed pain medications, but this still didn’t explain why he wasn’t growing. The pediatrician ordered blood tests, which all came back clear.

By the age of 2, Wade was still incapable of walking, talking, feeding himself or able to swallow properly, and was still significantly undersized. I went back to the pediatrician and he again suggested that Wade was just intellectually delayed.

When Early intervention and a team of psychologists, speech therapists, and occupational therapists were investigating my younger daughter, I begged them to help me with Wades case. They attributed Wade’s lack of speech, walking, toilet training, and eating to the fact that he is the youngest child of 6 other siblings and we did everything for him and he needed to do it for himself. I found this upsetting to say the least as we did not do everything for him, considering his older sister, Frances, has downs syndrome.

Wade's doctors decided that he was just intellectually delayed and I was a paranoid mother, with an exception to the psychologist who came forward, believing there was a lot more to it. He contacted the pediatrician and asked him to write a referral for an MRI. The next day I saw the pediatrician, he was reluctant and did not want to give Wade an MRI, stating it would prove nothing and wouldn’t be any good for his health. Upset, angry, and confused, I asked if it were his own son, presenting the same delays, and such a significantly small structure would you then give him an MRI? He finally gave in, once again stating, “It won’t show anything.”

After, four hours in the MRI, he finally came out. There was no word from doctors or nurses. He was just released. 2 months passed. When the GP called me into his office, he looked at me with sympathy. He looked as if he knew something that I didn’t, I suddenly became very nervous. He told me that Wade required brain surgery urgently, and explained just how sick my little boy was, with Arnold Chiari Malformation 1 and two syrinxes. I asked him to write everything down. I couldn’t concentrate to comprehend what he was telling me. I was in shock. I went home in denial, convincing myself that they got the MRI’s mixed up. This can not be my little boy. The next morning I called the pediatrician, explaining everything that my GP had explained to me. I was told that his condition was “No big deal” and his surgery wasn’t urgent at all.

I then received a call from the Royal Childrens Hospital, and they wanted to see Wade urgently. They explained to me that he had a syrinx in his c section and one in his t section and they had to remove part of the bone at the back of his head. At this point Wade was 5 years old, and still not talking. I was told by his surgeon that his condition was “Rare and fascinating, and can be fixed”.

Wade had his surgery in January 2005. For me to hand my son over for brain surgery was something I can’t explain. Something inside me died. 5 days later he was discharged. The next day, I noticed his head was swollen, and there was clear fluid leaking from his head. I took him to the pediatrician, scared and desperate. As a mother, I knew this was not right. He told me to “Go home and have a cup of tea” that I worry too much. I put Wade in the car and took him to the Royal Children’s Hospital myself on a two-hour drive, him in the back seat vomiting. Once I finally got him admitted they taped the back of his head. His head was leaking brain fluid (CSF). He then started slipping in and out of consciousness, until he went into a coma. He was put into ICU, and operated on the next day to repair his dura leak. 4 days later, he was discharged.

When Wade was 6 or 7 he was able to talk slurred, and unclear words. He was always reporting headaches, migraines, dizziness, numbness in his hands and legs, vertigo, neck pain, and to this day, the doctors are still denying that these symptoms are not in any way related to Chiari when I know for a fact they are. They say there is something else wrong with my boy, but don’t seem to be looking for what it is. Only looking for medications to cover up the symptoms. We’ve trialed a lot of medications, and still can’t find any that do him a lot of good.

Also at the age of 6 or 7, Wade attended a mainstream school, he could only do two hours a day. The noise and light was too much for him to handle, he was in too much pain. Two years later, we put him in a special school. To this day, he still attends a special school, with a very low attendance as he if very often to unwell. And 80% of the time he is at school, I have to pick him up early because he can’t take anymore.

We are fighting today for doctors to listen to us, to help us, and to believe us. I, as his mother, feel so helpless. In Australia we don’t have any Chiari or Syringomyelia specialists as there is in America and other parts of the world. I’d love for Wade to have access to these brilliant people but it is impossible for him to travel. We need help. For someone to stand up for us and say that these symptoms he suffers are related to Chiari.

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Bryce's story

Note from author: During walk planning for the 2013 Conquer Chiari Walk Across America, I was introduced to Ian Autry. I had no idea that this was the father of the little boy I had read about the previous year when a head injury took his life. It was unknown before his accident that he had Chiari Malformation. It had touched my heart so deeply, even more so, the journey towards awareness and the way they keep Bryce's memory alive every single day. Losing a brother in my teens, I understand the trial and tribulations this family has endured, it takes a toll personally, physically and emotionally. This special "Faces of Chiari" is dedicated to Bryce and the unwavering love and dedication of his family. ~Melissa Neff~

On March 30th, 2012 the family of 6 year old, Bryce Autry said goodbye to him, days after he had fallen off his wagon and was unresponsive to what was first thought as a head injury. An MRI would later clarify that he had Chiari Malformation. During this devastating time they made the very difficult choice of donating his organs. This unselfish act, in turn helped 6 people from the ages of 17 months to 49 years old. In September, a nervous and emotional, Ian Autry was asked to speak at LifeCenter Northwest's Donation Celebration, where he also wrote letters to the recipients of Bryce's organs and corneas.

In September, 2013, a month before Bryce's 8th birthday, Bryce's parents Ian and Aria, and his five older siblings hosted the Conquer Chiari Walk Across America in Bozeman, Montana to bring awareness of Chiari Malformation to the community. Thanks to his oldest sibling Brittany, a budding photographer, they had many pictures of Bryce who is described as being "happy go lucky" and thankfully, quite the little ham.

December 20th, 2013, a year and half after saying goodbye to Bryce, they had the chance of meeting one of his recipients. "We were really excited that this day came," said his mom. "We were counting down... Oh my gosh we're actually going to get to meet her." Twenty-one-year-old Emelia Mijangos, received one of Bryce's corneas, after growing up with a degenerative eye condition that kept her from driving and going to college. After a tearful meeting, Mijangos quickly expressed her gratitude. " I already feel like you guys are my family," she said. The Autrys said it was surreal to look at her and know part of their son was looking back.

In January 2014, Bryce's 'florograph,' a depiction of Bryce, was part of the "Donate Life" float in the Rose Parade, dawning his now widely used picture of his "Superman" costume, a fitting picture for a little guy that gave 6 others a chance at life, a true superhero!

Our best wishes go out to the Autry family as they continue to heal and keep Bryce's memory alive in those they inspire to learn more about Bryce and Chiari Malformation.

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Sara's story

Sara has always been my one child that is known to be a klutz, so when she would fall down running due to losing her balance I would think nothing of it. When she complained of slight back pain, I again did not think much of it as she is always running around doing flips. It’s normal, she is a kid, she is having fun. That all changed in March 2013, when we went to the doctor for her normal check up at the age of 9.

Her doctor noticed a slight curve in her spine and sent us for X-rays. Her doctor even reassured as that it looks really slight and most likely will just have to be monitored as she grows. Two hours later we were being set up for an appointment with a Pediatric Orthopedic. Due to her severe case of Scoliosis they sent us for a MRI, as her Orthopedic stated it is not normal for a child her age to have this without something else going on. A week after her MRI, we get the call that she has a Chiari Malformation and was set up to have an appointment with the Neurosurgeon. Not only does she have Chiari and scoliosis she also has syringomyelia with about six syrinx's along her spine. The Chiari is also restricting her CSF flow. Sara was scheduled to have surgery on July 31st.

She was such a champ the day of surgery. All smiles going into the prep room and talking with both the nurses and the doctors. Sara never lost her smile at all. She was even reassuring me saying “mom it will be fine”. The doctor came out after surgery and let us know that everything went well and that soon I could go back and see her in recovery. I honestly will say seeing her in recovery was very hard. Not being able to help your child and see all the machines monitor everything, and IV’s in her small arms, it was a trial. I was so glad and thankful when she first opened her eyes and said “Hi mom is it already done”.

Her recovery went amazingly well. Again all smiles the whole time. All the doctors and nurses were amazed that this little girl never once complained of pain, and was always so courteous saying thank you for everything. She was healing so well that after 24 hours she was taking nothing for pain. She was released from the Hospital on Aug 2nd.

She missed her first couple weeks of school which was the hardest for her. In the past 3 years she has only missed five days of school and that was only due to Robotic competitions. Once she got back to school everyone was wondering how she was doing and were checking out her scar (we call battle wound) as it was clearly visible due to her going to a pixie haircut. Sara being the amazing girl she was explained to everyone what happened and why she had surgery. I received tons of complements on her strength, knowledge, and willingness to help others understand.

As of today, when you look at Sara you could not tell that this year has been a trail for her, you cannot tell that months ago she was in so much pain that sometimes she was curled up in tears, today all you see is this amazing young lady speaking up and giving Chiari a voice. Since surgery she has signed with a modeling agency, getting ready to do a local commercial this winter, being Captain of her Robotics teams, and working on spreading the word about Chiari and is just an amazing daughter.

The first picture is her winning Queen in her division, most beautiful eyes, most photogenic, three weeks after surgery. The second picture was taken after they moved her to PICU.

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Abbie's story

I want to share my baby girls picture and story. Abbie Layne was the happiest baby. She had already had a year of medical nightmares. She was born with a heart defect which she thankfully outgrew.

At her 6 month checkup the doctor noticed her face drooped on the left side and it was then that she was diagnosed with the birth defect torticolis which means the neck muscles were too short on the one side of her neck. She was sent to childrens hospital because she had developed brachycephaly which means her head wasn't growing right. She needed an infant helmet according to the first orthopaedic doctor we saw. Childrens hospital said that with intense physical therapy on her neck her head should straighten out. It did.

Her next problem was her legs. We ended up back at Childrens because we were told her legs were twisted and she was going to need braces. The specialist said she might not walk until she was 18 months but that she wouldn't do braces until she was 2. My little girl started walking at 10 months. She was unsteady but her legs weren't perfect. A few weeks before she turned 1 we were at a wedding and she was running all over. That next Monday she started falling. She was at daycare and she would stand up then fall. She couldn't walk without using the furniture for help. I took her to the doctors and the doctor she saw said it was a viral infection. The next day Abbie couldn't sit without falling over. I took her back in and she saw her regular pediatrician. She did blood work again and said her white count was a little high but that she thought it was something more. She said Abbie was not acting like Abbie.

She ordered an MRI and on the 28th of September, two days before her 1st birthday we had the MRI. We got the news she had Chiari malformation the next week. The 8th of October I met with the neurosurgeon and he said she needed surgery. I convinced them to wait until after Halloween since I had a 2 year old also and wanted them to have one more fun thing before surgery. November 1st Abbie had decompression surgery. She did great! She tried pulling out the ivs while in recovery! She developed a fever while in the PICU but that turned out to be an ear infection. She was released after being in the hospital for 5 days. She just went back yesterday because she was leaking out her incision but it was just drainage because she ripped open part of her stitches. She is back to being her normal active self just a week after major surgery! I know there are others that have more problems and some have less but for a 1 year old I'm proud of my baby!

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Cian & Kaelan's story

Cian & Kaelan are siblings who were diagnosed a month and two days apart with Chiari I Malformation. Their cerebellum tonsils are herniated 16mm & 10mm respectively.

On June 24th and September 17th, 2011, Dr. Jorge Lazareff, at UCLA led his team to decompress both children. They are doing remarkably.

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Celena's story

My name is Celena, I am 14 years old and was diagnosed with Chiari Malformation and Syringomyelia in March 2012.

I will be having another MRI to see if there have been any changes and to decide whether I will need surgery, I think that I will, I have vertigo 24/7. I been thinking about rasing money to find a cure for this rare and bad disorder, but I really dont know how and I dont think I can do the walk yet, maybe in the future.

I want to make my own website and try to give information and explain my story with it, and what it is really is and how people/kids have to deal with it.. I do videos on youtube but i feel like thats not enough..I would like it if you share my youtube channels, I will be telling my journey there.

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Rihann's story

Rihann was diagnosed with Arnold Chiari Malformation Type 1 at age 15 months.

Her first surgery was in March 2010 at age 17 months and second surgery was in Dec 2010.

Rihann started having trouble with passing out and seizures at 11 months. It took 4 months and a MRI too diagnose her. After her diagnosis, and meeting with neurosurgeon, her first surgery was 30 days later.

She did great for a month and then everything started over again. So in december 2010 was her second surgery. With multiple MRI, sleep study, and removal of tonsils and adnoids, and more MRI she is now diagnosed with a Syrinx at her C2.

Rihann is facing another surgery the summer of 2012. Please continue to pray for these children and help FIND AND SUPPORT THE CURE!!!!