One of the things I do to vent my frustration is call up Oakville's MPP - Kevin Flynn every few months, to remind him that there hasn't been any positive change to this situation since I first contacted him a year and a half ago. The last time I called I spoke with Sean, one of his office managers. I was very blunt and to the point. I pulled no punches. I laid into him. Because I could, and I felt entitled because in my books, they have yet to do anything to help Max.
Of course, he was not super appreciative of my verbal onslaught. He did his best to let me know that he agrees that something has to change, that the current system is not set up in a way that makes it easy for change to occur, and that children with Autism were not the only ones getting left behind.
What?
You mean, there are other people out there who are suffering too? Who don't have Autism? Huh. Go figure.
He told me about a young man named David Smyth, who is dying, and will not survive without a bone marrow transplant. The bone marrow registry is only updated on a monthly basis, and despite rallying all of his friends and family to get swabbed so they can be put in the donor database, he will likely die before the database is updated again.
That sucks. And it would be so easy for all of us to be part of the donor database so that people like David don't have to die.
So, as a way to apologize to Sean for being so mean to him on the phone, I went to onematch.ca and filled out a simple form so that I could receive a swab kit in the mail. If you live in the US you can go to marrow.org. My kit arrived last week and I took about 5 minutes today to provide my samples so that I can be added to a global database of potential matches for people all over the world.
5 minutes. That's all it took. And I feel pretty good. Amazing how helping someone else makes you feel so much better. I'd love it if you took 5 minutes and did the same. For David, and the thousands of people who are looking for matches throughout the world. Who knows - one day you might need to find a match.
Scott just told me that he thought it was great that I was willing to take pictures of myself looking so ridiculous. I challenged him to not look ridiculous while swabbing his inner cheeks from 4 different angles!
ReplyDeleteYou also look a bit like Tina Fey in those shots.
ReplyDeleteshe's pretty hot...I'll take it!
ReplyDeleteI did that a couple of years ago. I would be so honoured to give someone my bone marrow!But it is weird swabbing ones inner cheeks and then mailing it away to strangers.
ReplyDeleteRock God says Raptorblog is still awesome, btw.
You should have been meaner to Sean, he is trying to make you feel guilty for advocating for your son in hopes you will go away and stop calling since you now know there are others in harder spots. In case you do not know he is patronizing you AND insulting your intelligence – not having a donor available is different than not funding a program. Compatibility testing can be done in a doctors office, I find this database story odd since even if it only updates once a month the doctors office test does not have to wait a month and since family has all given (or can give) samples no wait is needed – what century is the state of medical care in there? Even if true he is comparing apples to oranges and using the age old “look someone is gonna die, you should be thankful and not complain about your place at the beggars table”. NB – nice to do the donor thing, all our cards are signed at home and more has come out of me for others than I originally had.
ReplyDeleteI don't think I should have been meaner - and he knows I won't stop calling no matter what. He was sharing his frustration with me about the many cases he works on, not just Max's. I couldn't do Sean's job - not in a million years. While compatability testing can be done in a doctor's office, none of this man's family were a match. They held clinics to get more people tested and it is these results that get updated once a month.
ReplyDelete