Matteo’s journey through recurrent ADEM shows the uncertainty, resilience and hope faced by families affected by rare post-infectious neurological conditions.

Matteo’s story

My son Matteo is only three years old. Until recently, he was a healthy, happy little boy – playful, active, and full of life. Today, he is fighting this rare neurological disease that doctors themselves are still trying to understand.

When symptoms first appeared

Matteo’s medical journey began on December 30, 2025, when he was diagnosed with a Respiratory Syncytial Virus (RSV), a common respiratory virus that most families expect children to recover from without serious complications. The very next day, everything changed. Matteo suddenly could not walk properly, lost coordination, and began behaving in ways completely unlike him. Alarmed by these sudden neurological symptoms, we rushed him to the emergency room, but no neurological testing was performed at that time, and he was discharged home in the early morning hours.

An uncommon diagnosis

Trusting my instincts as a mother, I brought Matteo the following day to a children’s hospital in Washington, D.C., where doctors immediately recognized that something was seriously wrong. After extensive evaluation, Matteo was diagnosed with Acute Disseminated Encephalomyelitis (ADEM).

Hospital care and treatment

Matteo was hospitalized from January 1 through January 7, including time in the Paediatric Intensive Care Unit (PICU). During this hospitalisation, he suffered a seizure and required intubation and breathing support while doctors worked to stabilize his condition. After several difficult days, he improved enough to move to the neurology floor and was eventually discharged with close medical follow-up.

But Matteo’s journey did not end there.

He was hospitalized again from February 6 through February 25 for continued neurological monitoring and recovery. Doctors carefully followed his development, hoping the worst was behind us.

A severe relapse

Then, on March 12, Matteo’s condition suddenly worsened again. He was admitted for a third time and remains hospitalized today after spending more than 17 days in the PICU. This relapse has been the most severe yet. Matteo lost significant motor function, experienced repeated worsening episodes, and required aggressive treatments. Alongside plasma exchange, his care has included high-dose steroid treatment, intravenous immune therapy, anti-seizure medication after he experienced a seizure, and further immunotherapy when the disease continued to be aggressive and difficult to control. He now remains on ongoing immunosuppressive treatment as doctors work to reduce the risk of further inflammation and support his recovery.

Searching for answers

What makes Matteo’s case especially difficult – and frightening – is that even his medical team is searching for answers. ADEM is typically considered a one-time illness, yet Matteo’s inflammation has returned multiple times. His neurology team is confused by the recurring attacks.

During this hospitalization, doctors performed a brain biopsy in hopes of finding a definitive cause. The results did not reveal any clear answers. Extensive genetic testing has also been completed, again without an explanation. Despite advanced medicine, specialists are still trying to understand why this rare condition continues to affect such a young child.

A difficult road for the family

As a parent, watching your child fight a disease that even experts cannot fully explain is overwhelming. Weeks have been spent inside hospital rooms, including long stretches in intensive care without sunlight. Some of the only moments of calm have come when holding him – moments when his neurological storming would briefly settle, reminding me that he is still fighting.

Recovery and hope

Matteo is now in a fragile stage of recovery. His doctors continue to monitor his brain closely, focusing on healing, development, and long-term neurological outcomes. Rehabilitation has become a major part of his recovery. After his prolonged hospitalization, he spent around three months in inpatient rehabilitation, receiving intensive physical therapy, occupational therapy, and speech therapy. Since coming home, he has continued specialist neurorehabilitation through a day programme, with ongoing support to help him regain strength, mobility, independence, and communication skills. Recovery from ADEM can take months or even years, and the future remains uncertain.

Our family is sharing Matteo’s story to raise awareness about rare post-infectious neurological diseases, the uncertainty they bring, and the need for early detection and specialized care. Matteo’s courage inspires us every day, and we hope that sharing his journey will help other families facing similar medical mysteries.