Hi, my name is Rebecca. I am 29 years old, and I am desperately trying to raise the funds needed to reach medical specialists in the United States who understand the rare conditions I am living with and are prepared to evaluate me. I have not been seen by them in person yet because I cannot afford the travel, imaging, and consultation fees — and without their help, my pain and mobility continue to decline.

A Lifetime of Misdiagnosis, Neglect, and Permanent Injury

I was born with a large port-wine stain covering more than half my body. My parents trusted SickKids Hospital in Toronto to investigate and protect me — but every concern was dismissed. SickKids repeatedly insisted that I had no vascular disease, no neurological involvement, and that everything was “just a skin condition.”

As a baby, SickKids referred me to Dr. Marietta Zorn at Scarborough Centenary Hospital (now part of Scarborough Health Network). She treated me from 6 months old to age 20 with pulsed dye laser, focusing only on pigmentation while ignoring underlying conditions.

Traumatic Surgeries and Anesthesia as a Child

Every laser treatment Dr. Zorn performed was done under anesthesia. I underwent countless surgeries from infancy through my teenage years.

Some of the most traumatic moments of my childhood happened in those operating rooms:

I woke up in the middle of surgery, terrified, not knowing what was happening

I sometimes woke up vomiting on the table

No one explained what was happening or comforted me afterwards

These procedures caused:

Severe scar tissue

Lesions all over my body that took over two weeks to heal each time

Permanent damage and discoloration, especially on my bottom lip

Long-term emotional trauma from fear, bullying, and isolation during healing

I wasn’t allowed outside in cold weather while healing, missed school and childhood activities, and endured constant teasing. My scars healed unevenly, but the emotional scars will last a lifetime.

Neuropathy Caused by Improper Laser Settings

Years later, after the pain became unbearable, I was evaluated by the head of neurology at St. Michael’s Hospital, who told me:

The neuropathy you live with today was likely caused by the pulsed dye laser treatments.

The settings used were too high, likely doubled beyond safe parameters, causing permanent nerve damage.

I now live with:

Burning, electric nerve pain

Hypersensitivity to touch

Severe, permanent nerve damage

Daily suffering that worsens with time

This injury was preventable.

The Conditions That Were Missed for Decades

Decades later, through genetic testing and specialized imaging, the truth finally came out — conditions I was born with, but were never recognized by:

SickKids Hospital — dismissed all concerns

Dr. Marietta Zorn at Scarborough Centenary Hospital — treated only the skin pigmentation

These conditions include:

Klippel-Trenaunay Syndrome (KTS) – PIK3CA mutation

Sturge-Weber Syndrome (SWS)

Severe vasculopathy

Stage 4 venous reflux disease

Major venous malformations

Deep vein thrombosis (DVT) — which I developed during vein removal surgery

Progressive neuropathy and nerve damage

Debilitating mobility limitations

I am also a fraternal twin. My brother has no visible symptoms, but one study wants to do an MRI with contrast on him to check whether he may also have brain involvement of Sturge-Weber — showing how rare and medically important my case is.

Pain That Controls My Life

The pain I endure daily is overwhelming:

Burning neuropathy from nerve injury

Stabbing, deep pain in my legs and pelvis

Severe swelling and veins that pool blood backward

Deep pressure and heaviness that force me to sit after only a few minutes of walking

I have been declared 100% permanently disabled.

Surgeries That Nearly Cost Me My Leg

A procedure meant to relieve pain instead caused:

Deep vein thrombosis (DVT) — developed during the surgery

MRSA

Cellulitis

Staph infection

Strep infection

These complications nearly cost me my leg and worsened my vascular disease.

Canada Cannot Treat Me

Doctors in Ontario have admitted:

They cannot properly treat Sturge-Weber combined with KTS

They do not have specialists for my complex combination of disorders

They can only offer pain medication, not treatment

I am out of options here.

My Only Hope: Specialists in the United States

Thanks to the Sturge-Weber Foundation, I have been accepted for evaluation by:

Dr. Csaba Juhász — Wayne State University (Michigan)

Advanced MRI for SWS/KTS brain and body evaluation

Dr. Anne Comi — Kennedy Krieger Institute (Baltimore)

World-renowned specialist; initial consultation $1,292.80 USD

HIFU Venous Trial — Connecticut

Accepted me for evaluation of severe venous disease

Because I live in Canada, none of these costs are covered as treatment is all located in U.S.A

I must pay for travel, hotels, imaging, and consultations myself.

Why I Am Asking for Help

I have lived 29 years in pain that could have been prevented. I was misdiagnosed, ignored, physically harmed by treatments, and left to suffer in silence.

I am now fighting to save what little mobility I have left, to relieve the constant pain, and to finally receive the medical care I should have had as a child.

Your support will give me:

A chance at proper diagnosis

Access to specialists who understand my rare conditions

The possibility of treatment and a future with less pain

Please, I am begging the community to help me. Every donation, no matter how small, brings me closer to the care I desperately need. Sharing my story is also life-changing — even if you cannot donate, your voice matters.

I have spent my whole life waiting for help. You can be the reason I finally get a chance to live with hope, healing, and dignity.

Thank you from the bottom of my heart.

—Rebecca