Sylys’s Story
Sylys was born on December twenty-eighth, twenty-twenty-three. What initially appeared to be a normal, healthy birth quickly began to change. By just two weeks old, we started noticing concerning signs that something was seriously wrong.

We took Sylys in for testing. Those initial tests came back abnormal, and he was life-flighted to OHSU. That flight marked the beginning of what became every parent’s worst nightmare.

Early Hospitalization and Search for Answers

Sylys spent several weeks at OHSU. Doctors ran extensive tests and tried multiple medications, yet no one could tell us what was wrong. Despite aggressive medical intervention, Sylys showed little to no improvement.

During this time, I remained home caring for our other child, Ronan. Eventually, Sylys’s mother became overwhelmed by the situation, and I rushed to OHSU. Ronan went to stay with his grandparents in Tillamook.

Weeks passed with no answers. Sylys’s condition continued to deteriorate. I demanded that a full genetic panel be conducted. While we waited three to four weeks for the results, Sylys experienced hundreds of thousands of seizures. We tried everything doctors suggested. Only a few treatments showed any benefit.

One of those treatments was cannabis. Under the supervision of Doctor Choe, and with OHSU Children’s Hospital fully aware and monitoring, we began administering cannabinoids. This was the first time we saw real improvement.

Other medications caused serious harm. Keppra, in particular, nearly killed Sylys. At that point, we were left with no good options—only waiting and watching.

Eventually, we received approval for Epidiolex. Sylys became the first child ever prescribed Epidiolex at just three months old. We saw another decrease in seizure activity, and for a moment, we believed this might be the breakthrough we had been hoping for. Unfortunately, while it helped, it was not enough.

OHSU ultimately sent us home, telling us there was nothing more they could do.

Genetic Diagnosis

As we were preparing to leave, the genetic panel results finally came back. Our worst fears were confirmed.

Sylys was diagnosed with a severe and extremely rare genetic disorder. He carries a double mutation and splicing defect on the SV2A gene, along with an R289X variant. This combination had never been documented together before. Mutations of the SV2A gene itself are extraordinarily rare, making Sylys’s case almost unheard of.

The SV2A gene regulates synaptic vesicle function and neurotransmitter release in the brain. Disruption of this gene is linked to severe, treatment-resistant epilepsy and profound neurological impairment. Sylys’s mutations caused catastrophic loss of SV2A function, explaining his seizures, resistance to standard medications, and dangerous reactions to drugs like Keppra. Cannabinoids and Epidiolex were medically rational, individualized interventions administered with full physician oversight.

We were told to enjoy the time we had left. I refused to accept that answer.

Searching for Help Worldwide

I contacted genetic research facilities and specialists across the world—from London to Boston. Every call ended the same way: there was no cure, no treatment protocol, and little to no information. We were told we were on our own.

During this time, our family relocated from La Grande, Oregon, to Redmond, Oregon, due to financial and housing instability.

Escalation and State Intervention

Sylys had a medical emergency we could not manage at home, so we took him to the emergency room in Redmond. We were told they could not help. We were referred to a doctor at COPA in Bend.

That physician attempted to prescribe Keppra. I refused, clearly stating that Keppra had previously nearly killed my son. When we attempted to leave, law enforcement and hospital security stopped us. A warrant was issued for Sylys, alleging I had refused all medical treatment—despite my refusal being specific to Keppra only.

Two days later, on June fifth, twenty-twenty-four, O-D-H-S intervened and removed both of our children. We were told that if we admitted to neglect and domestic violence issues—on both sides—we would have our children returned within thirty days. Under duress and fear, we complied.

Foster Care and Denied Access

Sylys was placed in a foster home in Eugene, Oregon. We were denied visits and told he was too medically fragile.

We took O-D-H-S to court. The court ordered that visits be arranged within seven days. We were granted one visit.

During that visit, I observed the foster parent, Christina Holcomb, lift Sylys by one arm and one leg and hand him to my mother. This occurred over video. I reacted immediately, stating she was going to hurt him. She later accused me of making threats and using abusive language. Video evidence proved these claims false, and O-D-H-S acknowledged that I had done nothing wrong.

Despite this, the foster parent refused to allow further visits. O-D-H-S then assigned a nurse from OHSU to supervise visits. Two visits went well. During the third, the nurse repeatedly interrupted me while I spoke to my son. I eventually told her to stop and allow me to have my visit. She accused me of threatening her with a gun. Video evidence again proved this to be false. At that point, O-D-H-S struggled to find anyone willing to respect my clearly stated boundaries. Visits were cut off once more, citing that I was too aggressive for Sylys’s medical condition.

Medication Violations and Hospitalization

In the following weeks, the original foster parent located my TikTok account and initiated public conflict. In the process, she revealed her own personal information. After receiving death threats, Sylys was moved to OHSU.

Despite a court order explicitly prohibiting Keppra, the foster parent allowed Keppra to be administered to Sylys less than forty-eight hours after the order was issued. I reacted strongly and confronted state employees.

In December twenty-twenty-four, I received a message stating I would finally be allowed to see Sylys—at OHSU. I was told I had four hours over two days to say goodbye, as he was not expected to survive. I was notified on December twenty-third—just before Christmas.

Turning Point

I spent every moment I could with Sylys. I knew he was not dying—he was being mistreated.

It was later confirmed that the foster parent had been administering rescue medications every few hours.

After returning home, I began making calls and pushing for accountability. Unknown to me at the time, Sylys’s current foster mother was observing everything. Despite being warned against me, she questioned what she was being told. Against O-D-H-S instructions, she gave me her phone number during our first visit. From that moment, an unspoken bond formed.

I firmly believe that without my fight—and without the courage of Sylys’s foster mother—Sylys would not be alive today.

Since then, I have been allowed regular communication, photos, updates, and meaningful involvement. I am now actively directing Sylys’s medical care.

Online Advocacy and Parent Voice

Families of medically fragile children often turn to social media—TikTok, Facebook, and support groups—to document conditions, share treatment updates, and raise awareness of systemic failures. These platforms are essential networks when traditional systems fail.

My online advocacy has been a necessity to protect Sylys, share medically supported decisions, and push for accountability. Instead of supporting my lawful speech, O-D-H-S attempted to suppress it, threaten retaliation, and weaponize my rights to record and advocate. Documenting facts and advocacy online is protected speech and essential to child safety.

Threats Regarding Ronan

Since Ronan’s return, O-D-H-S has threatened to remove him in retaliation for my lawful advocacy. Agencies should focus on actual danger to children, not whether a parent asserts their legal rights. Instead, O-D-H-S has tried to weaponize my constitutionally protected speech, citing threats like “you can’t record me” or “if you protest, we will remove your kids.”

Legal and Systemic Failures

This petition exists because my parental rights were violated from the very beginning. Court orders were ignored. Constitutional rights were disregarded. Medical decisions were overridden despite documented harm.

Training in civil rights and medical literacy is critical. If O-D-H-S understood the law and the strength of parental rights, situations like ours could be avoided. Agencies must be trained to focus on protecting children, not punishing parents.

There must also be laws protecting medically fragile children from false allegations, with enforceable consequences for agencies or medical professionals who act outside legal and ethical bounds.

No parent should be forced to choose between compliance and the life of their child.

Sylys’s story demands change.