A Mother's Determination: Unraveling Gage's Rare Neurological Condition

When Candice Sanders noticed her usually energetic 11-year-old son Gage was fatigued and beginning to lose basic motor skills, little did she know how fast it would escalate, and how serious it would become. But with the experts at Oklahoma Children’s Hospital OU Health promising they’d fight for Gage Candice knew they had the support they needed to make it through.

Twin brothers Gage and Cash Sanders came down with walking pneumonia in November 2024. The boys were given medication for the illness and Cash recovered. Gage required a course of steroids to clear the infection. He had pain in his legs that made his walking difficult, and his arms felt heavy and achy. He couldn’t pick up anything heavy and he lost the ability to pull.

The pediatrician assured Candice that her son’s symptoms were temporary and probably related to the medication.

In December, the twins picked up another respiratory virus. Cash recovered in a couple of days, but Gage was sick for almost two weeks. The respiratory symptoms had lifted but he was fatigued and still ached.

When Candice took the boys to an Oklahoma City Thunder game on December 23, Gage was quiet and listless while Cash was filled with energy and excitement. Gage struggled to walk and move around and lay on his mother’s lap throughout the game.

Candice took Gage to the pediatrician several times, and he was tested for mononucleosis; a contagious viral infection. The blood tests were negative and showed nothing of concern.

Meanwhile he was losing more motor skills — Gage’s hands were shaking, and he couldn’t open them. He couldn’t tie his laces or button his clothes, he was vomiting, and he had daily debilitating migraines. He lost the reflexes in his arms and legs, and he couldn’t walk. Every few days new symptoms would develop, and Candice called the pediatrician constantly. An MRI was scheduled but the appointment was three weeks away. Candice knew Gage couldn’t wait that long.

“I was scared, but so was Gage,” said Candice. “He felt as though no one was listening to him and that made him angry. I had to advocate for my son. I had to do something.”

Desperately Seeking Answers

On January 21, the Guthrie mother took Gage to the emergency room at Oklahoma Children’s Hospital OU Health.

The emergency medical team, along with the pediatric hospital team led by Dr. Matthew Le, M.D., clinical assistant professor in the Department of Pediatrics at the University of Oklahoma College of Medicine, ran tests and again, they showed nothing. Even the brain MRI showed nothing to explain Gage’s symptoms.

“I knew something was seriously wrong with my son,” Candice shared, “and I begged the team to fight for Gage — to put emotion into medicine and find out what was going on. They promised me they wouldn’t give up, and I knew I could trust them.”

A Rare and Frightening Diagnosis

A neurologist examined Gage and further MRIs were performed, but this time, of his entire spinal cord. Finally, the images from the lower lumbar scan showed something. Gage was given a lumbar puncture, and they confirmed the diagnosis — he had Acute Motor Axonal Neuropathy (AMAN).

AMAN is a type of Guillain-Barré Syndrome (GBS) that mainly affects the motor nerves, leading to sudden muscle weakness and loss of reflexes. It is one of the less common variants of Guillain-Barré Syndrome (GBS), which itself is a rare autoimmune disorder. AMAN is seldom seen in the United States, especially in children, and often follows an infection.

If left untreated muscle weakness can get worse and lead to serious problems. It can make it hard to breathe, sometimes requiring a ventilator. Recovery is slower, and there's a higher risk of permanent nerve damage and long-term disability. Early treatment helps improve outcomes and reduces these risks.

Candice and Gage were relieved to finally have a diagnosis. As frightening as the diagnosis was, at least they knew what they were dealing with.

Treating AMAN

AMAN is treated with intravenous immunoglobulin (IVIg). IVIg is a treatment where antibodies from healthy donors are given to the patient through a vein (infusion) to help boost the patient's immune system.

In AMAN, the body's immune system mistakenly attacks the motor nerves, causing muscle weakness. The antibodies in IVIg help by neutralizing the harmful immune response and reducing inflammation. This allows the nerves to heal and improves muscle strength.

Gage received five infusions of IVIg, and he responded immediately.

“Gage started showing back some of his abilities straight away,” said Candice. “He was able to hold a fork and feed himself again. He could put his clothes on, and he was able to walk short distances without falling over.”

Finding a New Normal

Oklahoma Children’s Hospital pediatric hospitalist, Dr. Stephanie DeLeon, M.D., Associate Chief Medical Officer for Children’s Services and Section Chief of Pediatric Hospital Medicine at OU College of Medicine, took over Gage’s care several days into his hospital stay. He was already showing signs of improvement but not back to his “normal” self yet.

Gage was in Oklahoma Children’s Hospital for nine days. Once the infusions were finished, he was able to go home and start the recovery process. But he was still physically impaired by the illness, and feeling the strain of how much had changed in such a short time.

“Even though we’re at home, it’s still an adjustment both mentally and emotionally for Gage,” said Candice. “That's maybe one of the components we didn't expect — how hard it would be. When we were in the hospital, we had so much care and support, and now we are trying to find a new sense of normality with Gage’s limitations and ongoing recovery. It’s hard for him.”

Gage recently went back to school. He can only walk short distances and is relearning some motor skills. He has physical therapy every Tuesday and will be having nerve conduction tests to examine the level of nerve damage he has. Recovery from GBS usually takes about 12 months, but with AMAN, it could be three to four years. At this stage they are unsure of the level of recovery Gage will make in motor skills but are hoping he can get back to his favorite sport, jiu-jitsu. As a grey belt, jiu-jitsu is an important part of Gage’s life.

“Gage was sick for several weeks before we made the correct diagnosis and were able to start treatment,” said Dr. DeLeon. “He was doing so much better at the time of hospital discharge, but he will need ongoing occupational and physical therapy and regular neurology follow-ups for the coming months. He overall has a great chance for a full recovery, but it’s not a quick recovery.”

Specialized Care for Complex Conditions

After having felt as though they were being dismissed everywhere else, Candice is so grateful for the level of care that Gage received at Oklahoma Children’s Hospital.

“The team fought for answers when nobody was listening to me,” said Candice. “I cannot say enough good things about these people. You just don't expect so many people to care with such heart when working in complex situations like ours. I could not have asked for a better team. I am so thankful we went to Oklahoma Children’s Hospital when we did — they're incredible people and they feel like family.”

As an academic health system, OU Health trains future doctors, which keeps care standards high and brings new knowledge into practice. Patients often receive better care at academic health centers because they lead in medical research and offer the latest treatments, technologies, and specialists. During his hospital stay, Gage’s team included residents and medical students, so not only did Gage receive excellent care, but he also helped teach future generations of physicians about this rare disease.

“Gage is a great example of the multi-disciplinary care we provide at Oklahoma Children’s Hospital every day. Our pediatric specialists are well equipped to take care of the most complex and rare conditions, and we do it in a family centered way. Gage had many excellent physicians thinking outside the box to ensure he received the best care, and he interacted with dedicated pediatric support teams such as physical therapy and child life who are experts at treating kids and their families during complicated hospital stays.”

Learn more about Oklahoma Children’s Hospital pediatric neurosciences services and specialists or schedule an appointment at (405) 271-4700.