Hi, my name is Mylene.

My husband and I are proud parents to an amazing 5-year-old, and today, I’m reaching out during a critical time in my journey with a rare, life-altering condition called Idiopathic Intracranial Hypertension (IIH).

I was first diagnosed in October 2016, nine years ago this week, after suddenly going blind while at work. Doctors were unsure of the cause, until a visiting neurology resident from Toronto suspected IIH within seconds of speaking with me. A lumbar puncture confirmed the diagnosis and temporarily relieved my symptoms, including my vision loss.

IIH causes dangerously high pressure inside the skull, putting immense strain on the brain and optic nerves. The symptoms are devastating: severe headaches, nausea, vision loss, and fatigue. Without proper treatment, it can lead to permanent blindness, or worse.

In December 2017, after medications and less invasive options failed, I had my first of 15 brain surgeries. A ventriculoperitoneal (VP) shunt was implanted to drain excess fluid from my brain. I will depend on this device for the rest of my life. Sadly, I've faced many complications: multiple shunt failures, infections, and repeated surgeries. The shunt currently in place, since January 2022, has lasted the longest, but it now appears to have failed too.

This past summer, my symptoms returned. Despite several attempts to adjust the shunt’s settings, nothing worked. A procedure in early fall revealed that brain tissue had blocked the catheter inside my brain. While my surgeon was able to temporarily restore flow, the relief didn’t last. The valve has since failed, and my condition is worsening quickly.

I have received an urgent VP shunt revision on September 11th a more invasive brain surgery to replace the device and stabilize the pressure inside my skull.

Everything went well until 3 weeks post op and I required another surgical revision on october 18th, coming out of the surgery I was struggling quite bit with pain that has gotten unbearable.

I am now awaiting an emergency transfer to Victoria as I have developed an intra abdominal abscess as a rare complication.

Why I'm Asking for Help

Over the past nine years, I’ve had to travel 1,700 km one way, over 30 times to access life-saving neurosurgical care. Flying was often impossible due to the risk of air pressure causing further brain injury. These trips, with hotel stays ranging from one week to three months, cost us everything: we exhausted our savings, maxed out credit cards, took out loans, and eventually had to sell our home just to repay a portion of the debt.

We’ve since moved provinces and are now 300 km from the hospital, a big improvement, but still far. My last surgery in September used up the last of our resources. We simply can’t afford this upcoming trip or the recovery period that will follow with the potential outcome of having an external drain and being hospitalized for 2 to 3 weeks.

I’m raising funds to help cover:

Travel to and from the hospital

Hotel stays near the hospital

Gas for multiple trips

Groceries, rent, and utilities during recovery

Out-of-pocket medical expenses and prescriptions

Asking for help like this is incredibly difficult. But I’m out of options, and I’m fighting not just for my health, but for time and quality of life with my husband and young child.

Every donation, share, or message of support means more than I can say. Your kindness will help me access the urgent care I need and bring some much-needed relief from the pain and pressure that has dominated my life for nearly a decade.

From the bottom of my heart, thank you for reading, and for helping however you can.

With love and gratitude,

Mylene