This is for Cory

Cory was born with two rare health conditions, Primary Intestinal Lymphangiecstasia  (PIL) and Primary Lymphedema . There is no known cure for PIL and medical expertise is very limited due to its rarity. These conditions, in Cory’s case, cause swelling and fluid accumulation in three of four of his limbs plus his abdomen and internal organs—specifically his small intestines. 


According to NORD (the National [USA] Organization for Rare Disorders), “PIL is a rare disease that affects males and females in equal numbers. The prevalence is unknown”. You may be familiar with Secondary Lymphedema , often a condition that results in women after a mastectomy, where the lymphatic system is permanently disrupted between an arm and the chest. Primary means that one is born with it. For Cory, this has meant chronic daily discomfort along with life threatening symptoms such as fluid accumulation in the chest cavity. The latter symptom causes one lung to collapse.


Cory has faced formidable challenges throughout his life . The daily tasks of controlling the fluid take up a significant amount of Cory’s life and income: he spends hours a day in a whole body ‘sleeve’ with a compression pump (see image in linked article) to manually drain the fluid, he wears constraining garments to prevent daily fluid accumulation in his limbs and abdomen, his diet is restrictive and requires special purchases, he injects a pharmaceutical drug daily into his own arm (and the cost of syringes are barely covered), etc.  As with any primary, chronic health affliction, Cory’s lifestyle revolves around his condition. 


It is and will continue to be a lifelong challenge. 


Cory has ‘tools’ to somewhat manage the conditions. Health care in Saskatchewan covers some of the cost of these tools. Yet there are more tools that can be added to meet more of his needs. This fundraiser is a humble reaching out—a dreaming out loud—so that Cory could for once feel that his toolbox was full. This is about resources. 


Will you be part of his resourcing?


On top of daily management, regularly on his calendar are surgeries, tests, biopsies, and other hospitalizations, including monthly  hospital visits for therapeutic manual drainage. At 12 years old, Cory (and his mother) went to a specialized clinic in Germany for treatment and to learn as much as they could. That time, Saskatchewan Health surprisingly agreed to fund that. This time, funding is much less certain.


Cory has been trying for two years to obtain a referral to a specific physician and health researcher at Stanford University in California, Dr. Stanley Rockson . This doctor has been leading clinical trials to test a drug that could cure lymphedema and the results of the trials are very promising. Dr. Rockson has agreed to consult with Cory’s physicians in Saskatchewan but an initial assessment is required.


Finally, Cory’s surgeon agreed to make the necessary referral and Cory will be going to Stanford University in August. However, the surgeon is not hopeful that Saskatchewan Health will agree to cover these costs. Cory is going to regardless.


This is about hope.


Going to see this doctor is important. 

It is about seeking the best treatment possible. 

It is possibly becoming involved in research for a cure. 

It is the next step on Cory’s path towards greater comfort and healing.

It is the transitioning  from enduring to boldly believing that this will get better.


Will you be part of his healing?


This fundraiser is asking you to not only believe with him, to not only to share in hope, but to contribute to healing, as a collective, as a community. 


We’re all in this together.