Hope for Ophelia

When you ask Ophelia what hope means to her, it is a chance for survival and a life-saving treatment.

Ophelia Brown wants to be able to do the things most other people her age can—hang out with friends, create art, and continue her education so she can become a filmmaker.

Some days though, even brushing her teeth and getting dressed feels like an insurmountable challenge. Ophelia has Complex Regional Pain Syndrome (CRPS) which is a rare neurological disorder that causes excruciating chronic pain for its sufferer. CRPS is ranked among the most painful of all documented medical conditions- it has no cure and very limited treatment options. It is known colloquially as “the suicide disease” due to the high rate at which sufferers take their own lives to escape the pain. 

Ophelia’s pain started when she was just nine years old and gradually intensified until she was 22 when it became completely debilitating. In addition to the chronic pain, Ophelia has developed several comorbid conditions, ankylosing spondylitis and gastroparesis, which further limit her abilities in everyday life.

In September of 2021, Ophelia’s condition worsened, and she celebrated her 23rd birthday in hospice care, unable to eat, move her hands, or even to speak. Ophelia knew she couldn’t continue living this way and wrestled with feelings of helplessness and suicidal thoughts. Ultimately she made the courageous choice to stay and fight and not to give in to the pain. With the aid of powerful prescription painkillers, Ophelia was able to leave hospice and regain limited basic functions such as eating meals and moving her arms and hands. However, due to increased scrutiny and regulation to manage the opioid crisis, those with severe neurological conditions find their access to prescription painkillers unreliable. More importantly, their effects fade over time and are an unsustainable long-term treatment option for those trying to build a life with chronic pain. 

Having exhausted the Canadian healthcare system, Ophelia hopes to get the opportunity to try treatment doctors have been developing specifically for CRPS and other rare neurological conditions. The Florida Spine Institute is a clinic in Florida that specializes in pain relief for CRPS using ketamine infusions. The cost of the treatment plan, including travel and lodging, is significant and is not covered by insurance. At this point, we are estimating $42,000 to send Ophelia to this treatment.

Ophelia truly believes it will help her quality of life. And in that belief, life can be lived. Please help us fund this treatment so her inextinguishable light can illuminate a path of hope for others through the dark.