Warrior Stories: On Earth

Kyler Lewis

Kyler Lewis suffered a hemorrhagic stroke from a grade 4 / 5 brain arteriovenous malformation (AVM) in 2020 at age 15. After the stroke, memory and neuro fatigue became a big problem. He has undergone gamma knife radiation & chemotherapy to shrink the size of his AVM  & takes medication for epilepsy, headaches and tremors.

Kyler’s TikTok, www.strokehasnoagelimit.com was created to spread awareness about the importance of early detection and explain why research funds for AVMs are so desperately are needed. Kyler received the Pediatric Stroke Hero Award by the American Heart / Stroke Association in 2022.

Kyler and his mother, Raylene founded AVM Alliance and continue to be advocates for those affected by AVMs and Pediatric Stroke.

Ryan Logan

Ryan received a Grade 4 Arteriovenous Malformation (AVM) diagnosis in February 2013. Headaches and visual disturbances prompted his evaluation. Initially, we were advised against treatment due to safety concerns.

In September 2014, Ryan experienced a minor brain hemorrhage, prompting a change in our approach. After extensive research, we connected with doctors at Memorial Hermann in Houston. They were confident in their ability to remove the AVM. Ryan faced the risk of headaches, seizures, spontaneous bleeding in arteries and veins, potentially leading to stroke. He also had over seven aneurysms within the AVM, heightening the risk. Despite the challenges, we proceeded with the procedures.

Unfortunately, during the first embolization, Ryan suffered a massive brain hemorrhage. Three weeks later, doctors performed a partial AVM removal. A six-week stay in the PICU followed, with a transfer to TIRR inpatient rehabilitation for another six weeks. The journey would encompass three brain surgeries and multiple procedures to successfully eliminate the AVM.

Currently, Ryan experiences left-sided leg weakness and is diligently working on restoring use of his left arm.

Aubrey Smith

On November 2, 2019, a seemingly normal morning took a frightening turn when Aubrey, aged 4, experienced intense pain in her left ear and began vomiting and feeling sleepy. Rushed to the Children’s Hospital, she underwent tests that yielded no clear diagnosis. A CT scan revealed a surprising white spot in her brain, and it was determined she had a hemorrhagic stroke from a brain AVM. Despite her successful surgery to remove the AVM, anxiety lingered.

In December 2022, an MRI raised concerns, leading to an angiogram in January 2023. The news shattered Aubrey’s family again— the AVM had grown back in the same spot as her previous bleed. With a new surgeon, Dr. Hedyat, they faced a daunting decision. Aubrey, now 8, surprised everyone with her courage, stating, “I’m not scared, I can do this.” Surgery on March 9, 2023, lasted 11.5 hours, and when it was over, relief flooded in. Aubrey healed remarkably and continues to undergo yearly MRIs, surrounded by a supportive community. Through her experience, she’s set to achieve great things, backed by the strength she’s shown and the support she’s found.

Evie Williams

At just 10 years old, Evie Williams experienced a life-changing headache. Initially dismissed as routine, the situation escalated quickly as Evie lost consciousness and was rushed to the hospital. A CT scan revealed a hematoma caused by a arteriovenous malformation (AVM).

After a six-hour brain surgery, and three weeks in a coma, she is now recovering at home with the assistance of home nursing help. Despite slow progress, Evie is showing positive signs of improved movement, facial expressions, and breathing. Her parents hold hope that one day she’ll regain her artistic passions and return to her former self.

Evan Cadena

On October 17th, 2020, our lives changed when Evan experienced a Grand Mal seizure, despite having no prior history of seizure disorder or health issues. It was revealed that he had a Grade 4 AVM on the left side above the Rolandic part of his brain. The doctors decided on a staged embolization approach. He initially lost mobility in his right arm and leg; however, through therapy, he managed to regain what was lost. In December 2020, Evan received the diagnosis of pulmonary embolisms in both lungs. Despite these challenges, he continued to make progress and eventually graduated from high school. In July 2022, a new growth was detected in his AVM, necessitating additional embolizations.

This time, the loss of mobility in his right arm and leg was more severe. The deficits were more noticeable, and his ongoing recovery remains a work in progress. Although it has been a challenging learning process, he remains determined to move forward. In May 2023, onset seizure activity led to another angiogram, revealing new growth in the AVM, affecting his entire body. Doctors performed a fourth embolization on the AVM to halt the development of new blood vessel connections.

Evan’s journey to recovery is undoubtedly demanding, but his unwavering commitment shines through. As he strives to regain more mobility in his right arm and hand, we continue to explore various programs and therapies that can aid in his rehabilitation.

Nicky Matteson

July 26, 2021.. On an ordinary night at 9:50 PM, everything changed when I told my children, Nicky and Alyssa, it was bedtime. After turning off the game console, Nicky collapsed, complaining of a severe headache. We rushed him to Huron Valley Hospital, just two streets away, which likely saved his life. I felt an overwhelming urgency as security hurriedly attended to our unresponsive son. We learned Nicky had a major brain bleed and mass. A U of M helicopter, specialized for such cases, was dispatched.

On arrival at the hospital, surrounded by medical professionals, we were briefed on the gravity of Nicky’s condition and the need for immediate intervention. He remained unconscious for three days, then underwent an angiogram, revealing he’d suffered a stroke from a ruptured AVM. Focusing on his stroke recovery, Nicky relearned basic skills amidst numerous medical devices. By October 1st, 2021, Dr. Garten’s team at Mott Children’s Hospital successfully removed Nicky’s AVM. Now, nearly two years AVM-free, we reflect on the importance of awareness and early detection, recognizing that one brain scan could have prevented our ordeal.

Jackson Scharf

Jackson’s AVM journey started 9/2/16 when he was 12 years old. He sustained a devastating hemorrhage in his cerebellum, the lowest portion of the brain towards the back of the skull. After the brain bleed, he had to learn to walk, talk and eat all over again. His AVM was removed with several surgeries, but years later has grown back.

Jackson is now undergoing treatment with gamma knife radiation. This is marathon not a sprint. Currently, jackson is being referred to a neurologist for his headaches. Jackson’s famiy is so proud of him and his resillance has taught them a lot about thriving through adversity.

Ely Hines

On January 2021, Ely received a diagnosis of an inoperable grade 5 CPA AVM after experiencing random seizures for six months prior. The term “Cerebral proliferative angiopathy (CPA)” indicates that his AVM traverses more than 2/3rds of his left hemisphere. Treating Ely’s AVM would likely result in a significant decline in his quality of life and potential regrowth, leading his medical team to choose conservative symptom management and monitoring.

Today, Ely is a vibrant 10-year-old boy, though we hope this positivity persists. The search for targeted treatments is crucial for families like ours, making foundations like this one vital. Ely faces daily challenges including seizures, whole body weakness on his right side, headaches, and fatigue. He handles these hurdles with remarkable strength, displaying his warrior spirit. Living with this condition is far from easy, as he misses out on childhood experiences and the simple joys others take for granted. We yearn for success stories and the hope that Ely will overcome this disease, supported by communities like this one.

Alyssa Leakway

On November 6, 2018 while at school, Alyssa had an unknown AVM rupture in her brain. She was flighted to the children’s hospital and had emergency surgery. The doctors never thought Alyssa would be able to do anything again but she is proving them wrong! She is working hard to get her independence back.

Bobby Stallworth

Bobby Stallworth’s AVM ruptured in 2021. Prior to the stroke, his parents had no idea about brain vessel disease. After much recovery, the family flew to UCSF in California where Bobby’s AVM was successfully removed. Bobby is a true AVM Warrior!

Ashley Lindsey

On Thursday, May 7, 2020, Ashley, a junior at Texas A&M, experienced a massive brain bleed caused by the rupturing of an AVM. She was rushed to a hospital via helicopter and underwent emergency brain surgery. After 3 hospital stays lasting over 150 days, months of therapy, and continuing rehab, Ashley is able at return to A&M to finish her degree.

Jaime "Jaimito" Ponce

In 2019, Jaime had his first seizure with a possible stroke. His seizure lasted approximately 3 min and was unable to open his eyes or speak. When we opened his eyelids, his eyes were syncope (meaning rolled back.) 

When he regained consciousness, he could hear us and squeeze my hand. This was the scariest moment in our life, to see Jaime go through that. He opened his eyes 2 hours later, spoke 3 hours later, and walked the next day but slept for an entire day following. Jaime was diagnosed with Capillary Malformation AVM.

Being an epileptic, Jaimito has had his up and downs, many tests, and even more blood work. Even though Jaimito looks fine, he still has a rare disease that may one day rupture. I pray every day for him along with all the other children and adults diagnosed with an AVM. It is really important to bring awareness and find a cure.

Morgan Boelts

The Boelts did not know Morgan had an AVM until it ruptured on 5/14/20. He had no prior symptoms. After his stroke came years of endless appointments and therapies but Morgan is a determined and hard working guy! He has fought for his recovery. Today, Morgan is doing amazing!

Hannah Austin

Hannah was 9yrs old when she suffered a sudden rupture on 27 August 2022. She was subsequently diagnosed with a grade 2 AVM. Stereotactic radiotherapy was done on 27 June 2023, so far she’s doing amazingly well. Back to her beloved horse riding and living her best life.

Mason Hammer

Mason was 10 years old when he suddenly woke up in the middle of the night with a headache and slurred speech. He was rushed to the hospital where it was doscovered that he suffered a brain bleed from a Brain AVM his family had no idea he was born with.

He spent more than 18 days in the hospital and had a craniotomy to have the AVM removed. Mason is now in therapy with a focus on working on his cognition skills. He is rocking it.

Cody Cotton

In March 2022, Cody visited home from his San Antonio apartment, where he’d lived independently for six months. During his stay, he experienced his first seizure, causing a car accident. We were nearby and rushed to help. He was taken to the trauma center, where an uncontrollable seizure led to sedation and ventilator assistance for testing. A head CT scan uncovered an unexpected AVM in his right frontal lobe, causing irritation and seizures.

He was transferred to a neuro hospital and, after observation, released home, beginning our journey to understand his condition. Cody’s diagnosis: an inoperable grade 4 AVM in the right frontal lobe, connected to speech and motor control areas. With limited treatment options, he’s undergoing CyberKnife radiation to shrink the AVM and reduce rupture risk.

Cody’s life transformed from independence to living at home. He can’t drive and his activities are limited. He experiences occasional grand mal seizures, along with anxiety and depression rooted in the AVM’s placement. Despite challenges, Cody remains surrounded by support, and an online community offers additional insight.

In March 2022, Cody returned home from his own place in San Antonio after six months. He had a seizure and a car accident, leading to hospitalization for testing. A CT scan found an unexpected AVM in his right frontal lobe causing seizures.

Transferred to a neuro hospital and observed, Cody’s inoperable grade 4 AVM was diagnosed. CyberKnife radiation aims to shrink it, despite changes in his life, activities, and mood. Cody’s supported by family and an online community.

Nathanael Adesanwo

Nathanael’s AVM journey started on September 17th, 2021 at 9 years old when he experienced an intense pain between his eyes at the bridge of his nose followed by vomiting, and uncontrollable body movements that appeared like seizures. He was diagnosed with a grade 3 AVM that had ruptured causing a catastrophic bleed into the inner most parts of his frontal lobe leading to a hemorrhagic stroke.

Three brain surgeries, a ventilator, a shunt, a tracheostomy, a G Tube, a diaphragm pacer and 249 days in-patient later we have been home since July 2022. We are doing in-home physical therapy, occupational therapy and speech therapy including using an AAC device and a stander to regain communication, core strength and mobility. It has been a long road for us but we have seen pieces of him return slowly and have hopes it will continue.

Phoebe Ward

From little hope and devastation to hope and immense pride. Our Phoebe has gone through more in her short life than we as parents would ever wish her too.

Prior to April 2021 we had never heard of those words…. AVM….. but Phoebe has battled back from paralysis, losing the ability to speak and swallow and enduring multiple cranios and a round of gamma knife to be told her AVM has gone and joining year 7 in a new school in just over 2 years.

We feel so lucky and privileged to be in this position right now but will never forget the hopelessness we felt not so long ago. Have hope and never give up. Tonight we toast to all the AVM Warriors and superhero parents fighting the battles. ❤️

David DiPrato

On November 6th, David was found unresponsive in his bedroom. He was rushed to the local children’s hospital where they found a large brain bleed. He had emergent surgery to place a EVD drain and was air flighted to John Hopkins in St. Petersburg, Florida for further intervention and to determine what was bleeding. During an angiogram, the provider found a Right Thalamic AVM and Aneurysm that have ruptured. They were able to embolize both during the procedure!

David is on the road to recovery. He has exceeded all expectations with his rehab and recovery! August 2023, David is back to baseline. He attends school and recently celebrated his 5th Birthday! We are so thankful, blessed and proud of David while he continues to surprise us all!

Katie Grant

Katie is a 16 year old living in Burlington, Ontario. She loves playing piano, singing and swimming with her dog. She had a sudden AVM rupture at age 10 which led to a hemorrhagic stroke. She lost the ability to eat, speak and walk and required 8 months of continuous hospitalization.

She truly is a miracle though! She slowly regained her skills and is now on par with her peers at school. This fall she is a leader for the new students beginning high school. We couldn’t be more proud of Katie!

Ian Danner

On 12/22/20, Ian suffered a ruptured brain AVM. He was 20yo and was lucky to survive. He came home to us at about 75% of what he was. He was doing phenomenal. We had no choice but to get his left frontal AVM removed due to the odds of rerupture and probable death. On 9/1/21 Ian had successful surgery to remove the AVM and replace the skull.

Unfortunately, during recovery he had an unexpected reaction and seized for 18 hours which caused catastrophic brain damage. Ian is home fighting everyday to relearn how to walk and talk, among so many other things. From AVM Survivor to Epilepsy Warrior.

Marina Ganetsky

Marina had a stroke when she was 10 years old due to a ruptured AVM at first she could not walk, talk, swallow, or read, but she always understood everything. Now, not only does she talk, she also gives presentations and is a published author.

She can now walk, but uses a walker when she is outside. Before her stroke she was right handed but now she is left-handed. She wants everybody to know that even after her stroke “I am still ME”! In her book “Or So They Thought: A True Story” – not only does Marina share the upward battle that she went through, but she reminds other kids going through their battles, that they “are not alone”.

Daniel McEvily

The morning of February 3, 2020, Daniel was taken to urgent care for a terrible headache, slurred words, and aphasia. He was diagnosed with a hemorrhagic stroke and sent via ambulance to the hospital where it was discovered that he had a grade 3 brain AVM in his left temporal lobe. Daniel has had an embolization with Onyx (a glue-like material, not coils), an unsuccessful attempt at a resection to remove his AVM (deemed inoperable), and photon beam radiation. After experiencing a tonic-clonic (“grand mal”) seizure in February 20023, Daniel has also been diagnosed as epileptic.

Daniel is a proud AVM Alliance Volunteer to help spread awareness, provide support, and find a cure for AVMs.

Note: To have your AVM Warrior featured here, please contact info@avmalliance.org

☰ Menu
× Close Menu
My cart
Your cart is empty.

Looks like you haven't made a choice yet.