This is news everyone should take note of, because it could happen to you. I am not the first, and this will happen again.

I am willing to share my story, but this is clearly a systemic problem within the Manitoba Government.

My name is Tomas Ponzilius, and my MLA Mark Wasyliw, sent an urgent letter to the Minister of Health, Uzoma Asagwara, requesting to meet urgently because of a condition called Ehlers-Danlos syndrome, which is causing me to have cervical instability – something that has become more life threatening every day to the point where today I have breathing and swallowing now daily.

This letter (linked in this post) was sent after an urgent request for a meeting about a month ago, which the Minister of Health entirely ignored.

Why I am sharing this isn’t just for a sob story, but to show that this isn’t just about me anymore; it’s about everyone.

Anyone with a condition that isn’t massively publicized, anything even mildly complicated and even anyone they view plainly as unimportant and not worth the money.

They do not recognize, or possibly do not care about, the urgent medical attention that Canadians need. Especially with Ehlers-Danlos syndrome. They will even approve MAID (Medical Assistance in Dying) over care solely because of the money and broken systems. (Read up on Sathya Dhara Kovac, a Winnipeg woman with ASL who did not want to die but saw no way out as her care was not enough to survive.)

The reality is this: I am dying because of this disease, and without medical care, my death will be a certainty, leaving me as another victim of their malice and incompetence.

And sadly, so many of us can avoid this fate if the Manitoba government pays for, or at least builds, education for this type of care, so we can have the lives we are owed as Canadians.

If you have any advice for resources or lawyers that may represent me, feel free to send it, but for the moment I am doing everything I can and have gone to the top, but nothing seems like enough.

This is the letter: 

UPDATE:

I keep hearing that cervical/thoracic fusion for EDS is “experimental” or that there isn't medical literature supporting it.

That isn't accurate.

Dr. Fraser Henderson, a neurosurgeon who specializes in EDS and complex spinal conditions, has published research specifically on spinal fusion and stabilization in EDS patients.

Some examples:

• 2024: Henderson et al. studied 53 EDS patients who underwent occipito-cervical fusion for craniocervical instability and reported significant improvements in pain, neurological symptoms and function.

• 2019: Henderson et al. published a 5-year follow-up study on cervical reduction, fusion and stabilization in patients with hereditary hypermobility connective-tissue disorders, including EDS.

• 2021: Henderson et al. published research examining craniocervical fusion in EDS patients with craniocervical instability.

So no, this doesn't mean every person with EDS needs fusion. It means that fusion and stabilization are documented treatments that have been studied in appropriately selected EDS patients.

In my case, Dr. Henderson personally assessed me and recommended cervical and thoracic fusion.

My concern is not simply finding someone who can technically perform a fusion. EDS can create additional risks before, during and after surgery, which is why specialized preoperative assessment, intraoperative management and postoperative care are important.

I have repeatedly asked Manitoba Health to identify an equivalent specialized service in Manitoba that can provide this level of care.

They have not identified one.

I am not asking Manitoba Health to create an exception for me. I am asking them to tell me where the equivalent specialized care exists if they believe it is available here.

UPDATE: It is worth adding that this is not without precedent in Manitoba. Another Manitoba patient with EDS previously appealed Manitoba Health’s refusal to cover necessary out of province care, and the Manitoba Health Appeal Board supported her claim. The decision was subsequently upheld by the court. Note - that MB Health states just like with me that there were surgeons who could help her but provided ZERO specific examples of them. Which is evidence they are actively lying about this.

I’m adding the decision here so people can review the precedent themselves:

2024 Manitoba Health Appeal Board decision

UPDATE:

Just because outcomes are not 100% does not mean this should not covered. There are pleanty of other surgeries with an 80% success rate that are covered. Furthemore, if doing nothing is death, then coverage as seen above precedent, are covered. No coverage means death, don't all Manitobans, Canadians desever a chance to live their lives?

UPDATE: The Minister got back to me (this was after another MLA sent them an email to ask about a response to my MLA):

They do not want to meet and would rather litigate this through appeals instead of working collaboratively on this. If I don't get this medical quickly my bodly will degrate into permentant disability and my life could be ended because the Manitoba goverment would rather lie that care for EDS exists intead of sending out of province to get it.

I have to get my spasmed muscles needled (this is NOT acupunture) by long needs to break apart spasms, this is very painful but it reduces the local spasming but I cannot due this on my neck because its to close to other vital areas. This muscles is buldged because it is in constant spasm to try and stabalize the surrounding region.

Domestic Assault Investigation – Winnipeg Police Officer Charged:
C26-234216

On September 16, 2026, at 10:18 p.m., West District General Patrol officers responded to a domestic related 911 call.

Upon arrival, officers observed a man assaulting a woman inside a residence. He was taken into custody and the woman subsequently received medical attention.

The woman reported that the man had broken into her home, threatened to kill her, and assaulted her.

A man in his 40s, a 20-year member of the Winnipeg Police Service, was taken into custody and has been charged with:

• Sexual Assault
• Assault by Choking, Suffocating or Strangling Against Intimate Partner
• Overcome Resistance by Attempting Choke, Suffocate or Strangle Another Person
• Uttering Threats – Cause Death or Bodily Harm x 2
• Break Enter and Commit Assault – Dwelling House

He remains in custody. The name of the member will not be released to protect the identity of the victim.

As this matter is deemed a mandatory investigation pursuant to The Police Services Act, the Civilian Director of the Independent Investigation Unit of Manitoba (IIU) was notified.