Nathaniel Schnier’s Journey to Communication

Nathaniel Schnier had accumulated years of notes reflecting his feelings.

This 13-year-old boy, who struggled with verbal communication during his early years, started speaking in full sentences at age eight. It’s quite the transformation.

“He had a list of everything that had upset him over the years,” his mother, Dr. Kathleen Schneer, laughed as she shared this with the Post.

From dinners that left him disappointed to a lingering grudge against his sister, it was evident Nathaniel had been eager for someone to listen.

“He kept everything to himself,” Kathleen, 54, remarked. “People often excluded him from conversations or assumed he didn’t follow along. But he understood more than they realized.”

Now, Nathaniel is part of a growing group of autistic youth who are finding their voices, thanks to leucovorin. This inexpensive generic medication is helping him express long-buried feelings and improving his communication skills.

A Decline in Voice

Nathaniel was once a lively toddler, engaging easily with others and maintaining eye contact.

However, he began to fall behind in developmental milestones.

“He didn’t walk until he was 14 months old and then his speech began to regress,” Kathleen shared. “That was when I realized something was off.”

Initially, doctors dismissed her concerns, suggesting she was simply comparing Nathaniel unfavorably to his older sister.

Determined to understand her son’s challenges, Kathleen, described as a “Mama Bear,” sought answers. At just 17 months, Nathaniel began early intervention services, including speech and occupational therapy.

Yet, by the age of two, he could only repeat phrases or express basic requests with single words like “water” or “outside.”

When he was three, he received a diagnosis of autism, along with receptive-expressive language disorder and ADHD.

“The thought of not being able to have a conversation with him was terrifying,” Kathleen admitted. “What if someone hurt him, and he couldn’t communicate that?”

A New Treatment Horizon

Following his diagnosis, Nathaniel ventured through various treatments, but Kathleen kept looking for alternatives.

In 2021, she noticed a call for participants for a double-blind clinical trial led by Dr. Richard Fry.

The pediatric neurologist was investigating whether leucovorin could assist autistic children experiencing cerebral folate deficiency, which involves a shortage of vitamin B9 in the brain.

It’s estimated that around 70% of autistic children have antibodies that hinder folate transportation to the brain, resulting in developmental delays.

Fry theorized that leucovorin could help bypass these obstacles, effectively delivering nutrients to the brain. The medication had previously been approved in 1988 to mitigate chemotherapy side effects.

In a study with 44 children, 67% demonstrated improvement in language skills within just 12 weeks after taking leucovorin twice daily, with no serious side effects reported.

“If you want a cure for autism, it’s not out there,” Fry stated. “But leucovorin has shown benefits for many children.”

This drug is relatively affordable, costing about $100 monthly without insurance and only around $10 with it.

Discovering Nathaniel’s Voice

Kathleen was both surprised and pleased to learn that Fry’s research was happening just a short distance from her home at Phoenix Children’s Hospital.

Once tests confirmed Nathaniel had the required antibodies and deficiency, he enrolled in the trial. It soon became evident he wasn’t receiving a placebo.

“When he began taking leucovorin, it was like a switch flipped,” Kathleen recalled. “He transitioned from speaking a few words to forming complete sentences within six months.”

Finally able to speak freely, Nathaniel began expressing thoughts he had kept hidden for so long.

“You can tell the TV in your brain,” he shared with his mother. “It was always there, but I just couldn’t say it.”

However, Kathleen is quick to note that this drug is not a cure-all. Nathaniel has been engaged in speech and developmental therapies since he was a toddler, which formed the basis for his progress.

“We don’t want people to think, ‘We’ll cut services for children with disabilities, but here’s a medication,'” Kathleen cautioned.

“While his ability to speak emerged, he still had to learn how to communicate effectively,” she explained.

“Conversation requires both asking questions and listening. It’s not just about saying what you’ve always wanted,” she added, emphasizing the role of speech therapy in his development.

Many of Fry’s patients continue their therapeutic interventions while on the medication.

“You need to treat multiple areas to improve overall well-being,” he remarked. “We believe leucovorin helps enhance the effectiveness of those treatments.”

Embracing Life

Currently, Nathaniel is pursuing guitar and trumpet lessons. He sings with the Phoenix Children’s Choir and even performed the national anthem at a recent Diamondbacks game.

This 13-year-old also competes in Special Olympics golf, swims on a local team, and is working toward scuba diving certification. Recently, he flew to New York City alone to visit his sister.

“I want to be an ice cream man,” Nathaniel exclaimed as he dashed out the door for school, clearly excited about the future.

Aside from some initial irritation, Nathaniel reported no significant side effects from leucovorin.

As conversations regarding expanding access to leucovorin continue, Kathleen supports the initiative, but with caution.

“It’s not a one-size-fits-all solution. It still takes a lot of hard work, and it may not work for everyone,” she noted, acknowledging that not all trial participants saw improvements.

“I think it’s beneficial for Nathaniel, but it’s not a miracle drug for everyone,” she reflected thoughtfully.

Her concern extends to potential implications for critical services supporting children with disabilities. Recently, Arizona announced funding cuts that could affect 18,000 disabled children.

“We must not encourage the idea that we can replace essential services with medication,” Kathleen insisted.

“If we want to truly support the disability community, we must ensure all options are available, paving the way for amazing results like Nathaniel’s.”