Help Faith Access Medication for Rare Illness

It was Faith's birthday this week, she turned 22. During those 22 years Faith has spent the majority of her life in and out of hospitals, at doctors appointments, having tests done, only to receive a steady stream of complicated bad news.

At 2 years old Faith was diagnosed with A-typical Kawasaki's Disease, A-typical meaning that they really didn't know for sure what was happening but that was the closest they could come up with to try and have an outline for treatment. Faith was treated, but it did not work completely and so she was followed by every hospital specialist for another two years, at which point she was diagnosed, at 4 years old, with Juvenile Idiopathic Arthritis. The arthritis was in almost all joints, jaw, wrists, elbows, fingers, knees, hips, toes, even tendons and ligaments. Years of treatments and tests and appointments, many hospital stays. There were struggles with school and quality of life during these times, but with her amazing, always positive attitude, at the age of 9 Faith managed to turn her hard times into something positive for others and started volunteering with the Arthritis Society. She spent many years attending events as a guest speaker and fundraising events to raise awareness, not just for herself but for others.

Then at 12 years old, Faith woke up one morning and could not see, everything was spinning and nothing could stop it. Once arriving at Kelowna General Hospital she was immediately flown by air ambulance to Vancouver Children's Hospital where she spent weeks trying to get a diagnosis. CT's, MRI's, Spinal Tap, among so many other tests. It was determined she could have Multiple Sclerosis, however at such a young age, they would not confirm as it was only one episode. Two weeks later, Faith was in Children's Hospital again with another sever relapse, a month later another relapse. Diagnosis confirmed, MS. With many, many relapses since, ranging from balance to total loss of function on the left side of her body and having to learn to walk and talk again, spending months in the Children's hospital away from home. Trying almost every medication available before finding one that has worked well and kept it fairly stable, though the thought never far away "will I be ok when I wake up tomorrow". Again, Faith turned her misfortune into an effort to help others diagnosed with MS and has spent many years volunteering with the MS Society.

Then two years ago, Faith started to have very sever bladder and kidney pain. Spending a year and a half in excruciating consistent pain daily, Faith's quality of life vanished. She could no longer work, no longer go out with friends, could not go shopping, or even go to eat a restaurant. Not sleeping longer than minutes at a time. The inflammation has gotten so bad that the fluid will not fully release from the bladder and has backed up into both kidneys, causing acute kidney failure due to swelling and fluid retention. The pain is similar to passing kidney stones, however, with this the pain does not go away and is ten fold. Day in and day out. It took a year and a half of being told there was nothing that could be done she just had to live with it, over 20 emergency room visits, before being taken by ambulance one night and spending two months in the hospital. Doing every test they could think of, it was diagnosed as Eosinophilic Cystitis. A rare inflammatory disease of the bladder whose origin and treatment are unknown. A condition that less than 200 people in the world have.

Currently Faith goes through a vicious cycle where a round of high dose steroids are given through IV on a tapered dose, but once those steroids have left her system the inflammation comes back with the same intensity and she is admitted to hospital again. The steroids are given 7 days a week IV, which means travelling three hours every day to access medication at the hospital. With no Dr's in Canada familiar with the illness there has been very little hope of how to move forward. There are no known treatments outside of what has already been tried but Faith was lucky enough to end up with a specialist willing to work outside the box. A new medication has shown positive results in two patients. With no other options, this is where Faith is left. Unfortunately the cost of the medication is substantial at $35,000 a year. The drug company will not offer any help with the cost, multiple applications to Pharmacare have resulted in denials each time, and it is not covered by insurance. (One other medication with same trial results but with a price tag of $125,000 per year).

Such a brief summary cannot begin to encompass how many difficult times have come, gone, and come again for her. As a mother, watching everything Faith has gone through, there are no words only heartache. As hard as it is to ask for help, this fundraiser is a last chance to give Faith the opportunity to get her life back. It will help cover the cost of the medication and other medical costs. She has given so much to others and is always so positive, no matter what life throws at her she is always thinking of someone else. Please help donate.