Pray for Paul

Paul was on a break for the summer after having completed his first year of university at Simon Fraser.
Needing money to pay off his tuition fees, he worked a full-time job at the local cinemas.
One morning, Paul woke up with what he thought was a severe strep throat. His throat was so swollen that he was having trouble breathing, and he could not even speak.

We rushed to the emergency room, where they took some blood tests. Paul was told his throat was the least of his worries. His kidneys were failing.
He then was transferred to another hospital, then was transferred again to a second hospital where he was diagnosed.
Paul was diagnosed with atypical HUS - an incredibly rare disease.
Paul was started on plasma exchange and dialysis.


It seems Paul will most likely need a kidney transplant.
He has constantly been in and out of the hospital since being admitted for 3 weeks initially, and has now currently been admitted for 2 weeks. Paul has already spent his 20th birthday in the hospital, and will have to celebrate Christmas in there as well. It is possible he may have to spend his 21st birthday while still sick...

Paul's mother has been worried sick and continues to lose sleep.
Paul's father has took time off work to care for Paul.
Paul's brother dropped his university courses in order to support Paul.

Please pray for Paul.


We are told the only treatment for atypical HUS is Eculizumab (Soliris). Its cost is $750,000 per year.

We have started a petition and collected over 2,000 signatures on paper and another 2,000 online.
With this, we were able to pressure the government into covering the medicine's costs, and Paul has received his first dose a few days ago. But the government has decided to give Paul only 3 months' worth of medicine.
Based on clinical data, 3 months of treatment is not enough to cure Paul.
Longer treatment coverage must be received or it will have no real effect in saving Paul from atypical HUS.

Online Petition: https://www.change.org/p/make-soliris-treatment-an-option-for-patients-with-ahus-and-their-health-care-providers?recruiter=816296395&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_petition&utm_term=share_petition&utm_content=ex14%3Acontrol

https://www.langleytimes.com/news/langley-teen-seeks-funding-for-750000-drug-soliris/

https://www.ahuscanada.org/disease-treatment/about-ahus/



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Organizer

Paul Chung 
Organizer
Langley, BC
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