Donate and support Rashan Yurkin

Rashan's battle with Aplastic Anemia & PNH (Paroxysmal nocturnal hemoglobinuria). Today was medication delivery for my oldest son who has aplastic anemia and PNH (they say PNH affects 0.5 to 1.5 per million...so I guess that is like 12,000 or so people in the entire world...and it's more rare in kids). Anyway, we get shipments of a crazy expensive drug every 2 weeks for something he needs for the rest of his life. This treatment has finally been showing results. For the first time in almost a year he has been able to go outside and do stuff. He seems to be on track to return to high school after missing his entire grade 12 year last year. He isn't dealing with horrible headaches and nausea that basically kept him hidden in his room for 9 months. He hasn't needed to get any further blood transfusions because his 'levels' are stable and at a good rate. All that is great news. Unfortunately, today the drug didn't show up...we had to call to ask why only to find out the coverage has expired so no delivery until it is sorted out. I am now extremely worried and stressed about this. The treatment is working and our medical system...drug companies, doctors, insurance, whatever all seem to not be capable of keeping us informed about changes that affect us...most importantly my son. We keep getting blindsided. We keep having to worry about what is coming next...how will we cope...how to treat....and more importantly how do we pay if there is no coverage. I am self employed and have no benefits. My wife isn't able to work right now because of all this and her insurance doesn't cover this drug anyway. Finding a way to balance all of this and come out of pocket for 'this and that' is nearly impossible. We have to drive back and forth to out of town hospitals multiple times a week because our local hospital can't deal with the case. I've not been able to work and maintain my business to the same ability as I have in the past and it all leads to time off work...and no work = no pay for me and my family. Money for gas, travel, medications that we have had to pay for that we should have been reimbursed for 6 months ago...it is just too much sometimes. Just wish this wouldn't be so stressful. My family has been dealing with this for a long time and it has taken a lot of 'encouragement' for us to share this...many has asked us to create this so they can help out.  We don't know what to do other than prepare to continue to find a way to pay for this and other ongoing medical treatments. The main drug to treat PNH costs 15k every 2 weeks.  Hopefully the system will find a way to get this covered...if not...not sure what to do. 15k every 2 weeks for the rest of my 18 year old sons life. I am working tirelessly to build businesses that may one day bring this into my life. 400k more a year is what I need...I MUST make this happen.  To those that have asked to help, we appreciate positive thoughts and prayers most. Rashan is a fighter and has pushed through many days where he did not want to continue.  Tomorrow will be a better day.