04/10/2026
This is a 19 year old patient of our Vaughan (Maple) location with a devastating medical case. We’d like to share her story here because we’ve seen our community work miracles 💙
On Wednesday our team met with Jeorgia’s mom, Karen Powers. Overwhelmed and desperate for help, what she needs more than ever is for her daughter’s case to gain traction and be seen by the right people who can provide her with urgent care.
With a heavy heart, we’re pleading with the public to continue to share her story…
FULL STORY (as written by Jeorgia’s Mother, Karen Powers):
“Jeorgia is 19 years old and has been completely bedridden for almost three years. She has Ehlers-Danlos Syndrome, a genetic connective tissue disease that impacts the body’s collagen, causing it to be unstable. Because collagen is what gives strength and support to the body: affecting skin, blood vessels, organs, tendons, unstable joints, the condition can impact nearly every system.
It has impacted Jeorgia’s spine and Jeorgia has Craniocervical Instability (CCI). With CCI, ligaments that hold the skull to the top of the neck (C0–C1–C2) are too loose, lax, or damaged. This instability allows excessive motion at the base of the skull, which can cause compression or irritation of the spinal cord, brainstem, or surrounding blood vessels.
Jeorgia’s neck isn’t stable, when she moves her head or even shifts her body, she experiences a constellation of horrible and debilitating symptoms. She lives in constant pain. She requires urgent surgery to stabilize her spine.
Jeorgia had been experiencing symptoms of EDS but until she was 16, was able to attend school socialize with friends and live her life. She looked forward to going university.
May 1, 2023, she called from school in tears, with severe head pain, nausea, dizziness and vision changes. And that was the last day she was able to be upright. She never returned to school.
Her friends are in their second year of university, but Jeorgia can’t read, watch TV, or tolerate light or sound. She has no quality of life. At 16 years old, Jeorgia had to leave her life behind because she can’t sit or stand without severe pain. She has lost all of her independence and her untreated conditions over 3 years have only worsened. She currently has no quality of life, but is clinging to the day she gets surgery.
We paid for an assessment in the US by a neurosurgeon who specializes in EDS. She has a clear diagnosis. CCI and a tethered spinal cord. This diagnosis is supported but imaging, but we have not been able to find a neurosurgeon in Ontario willing to assess or treat her. No one in Canada would even look at the upright MRI and assess it for themselves.
Jeorgia has been diagnosed by a neurosurgeon in Ontario with a jugular compression caused by her C1 from the CCI. This compression obstructs outflow from her brain and causes her to have high intracranial pressure symptoms. It has impacted her vision as well. The neurosurgeon who diagnosed this has no one to refer her to. The neurosurgical team at his hospital knows of no one in Canada dealing with her conditions to refer her to.
She tried to get help with just her tethered spinal cord, and after several referral denials, one neurosurgeon recently accepted. However, after seeing him, he said he would not be able to treat her in her current condition and referred her to a CSF leak clinic. She is diagnosed with spinal fluid leaks, known to be caused by high pressure. but they want her to take care of her other issues first. This brings her back to the underlying condition of CCI causing the jugular compression that no one treats in Canada. Jeorgia cannot get medical care for any of her severely disabling conditions.
We have taken her to six Ontario hospitals- both paediatric and adult. Each time, we have wheeled her out of the hospitals in the same condition she arrived. Bedridden, in extreme pain, and without care. She lies on hospital floors for appointments because she can’t tolerate the pain of being upright even for a few minutes.
We have been told she is outside of scope. We have been told by specialists that they have never heard of her condition. Multiple times, we have attempted to see a specialist to treat one of her conditions, and have been told to take care of the other ones first. There is no one treating CCI for EDS patients in Canada. No one with the knowledge to evaluate her completely. There is no one who will take responsibility for her care or treat any of her conditions. She is stuck in a loop.
When medical care is not available in the Canada, it is supposed to be available with the Out of Country care program. However, This system requires endorsement of an “equal” specialist to that of the treatment needed out of country. When there is no physician treating that condition or accepting patients for the condition, there is no way to meet the criteria to apply. Another loop, preventing access to medical care. MPP Teresa Armstrong recently addressed this in legislature.
We have worked with our MPP Michael Parsa and multiple MPPs have raised this gap in care in the legislature
Surgical treatment has been available in the US the entire time she has been sick. She could have had surgery in beginning and continued her life.
Jeorgia is getting worse and she is getting weaker. She needs surgery, but the long delays have cost her and are going to make her recovery so much harder. Without surgery, she will continue to spend every minute bed ridden, in pain, and continue to decline.
She needs surgery soon, before it no longer becomes a viable option for her. She has an incredible neurosurgeon at Mt Sinai Hospital in New York who specializes in her conditions.
We have no choice but to self pay for surgery in the US and have had to turn to a GoFundMe.”
- Karen Powers (April, 2026)
