The below poem came to mind when a mum got in touch with me, thanking me for joining in her battle to fight for her 3 year old son to get ERT in Australia. You see, in Australia, like in Ontario and other parts of Canada, if a child demonstrates that MPS II is affecting the child’s brain, because ERT does not halt cognitive decline, treatment is refused. The catch: there is now treatment to halt brain progression (the intrathecal trial Trey is in), but a child cannot participate in this trial or begin this intrathecal treatment unless the child has been on IV ERT for six monthes. In a nutshell, these governments are sentencing kids with MPS II, to death (for more on this, read Melissa Hogan’s blog: http://www.savingcase.com/index.php/2012/01/25/this-is-for-all-the-calebs/)
This poem is for Candice in Ontario, for Michelle in Australia and for all the families who need us to stand with them to fight for their kids’ lives. It is for all the parents who want their kids in the intrathecal trials, for now that there are new potential treatments on the horizon, there is more advocacy work to be done.
The poem also makes me think of my everyone who has come to our fundraisers, donated, sent emails/posts/tweets of love and offers of support. To our doctors & nurses who we could not advocate without. To my ‘gang of four’ and everyone in my MPS family. This is for you. You are not alone. We are not alone.
The Low Road
What can they do to you? What ever they want.
They can set you up, they can bust you, they can break your fingers, they can burn your brain with electricity, blur you with drugs till you can’t walk, can’t remember, they can take your child, wall up your lover. They can do anything you can’t stop them from doing.
How can you stop them?
Alone, you can fight, you can refuse, you can take what revenge you can, but they roll over you.
But two people fighting back to back can cut through a mob, a snake-dancing file can break a cordon, an army can meet an army.
Two people can keep each other sane, can give support, conviction, love, massage, hope, sex. Three people are a delegation, a committee, a wedge. With four you can play bridge and start an organization. With six you can rent a whole house, eat pie for dinner with no seconds, and hold a fundraising party. A dozen make a demonstration. A hundred fill a hall. A thousand have solidarity and your own newsletter; ten thousand, power and your own paper; a hundred thousand, your own media; ten million, your own country.
It goes on one at a time,
it starts when you care to act,
it starts when you do it again after they say no,
it starts when you say We and you know who you mean,
and each day you mean one more.