Friday, December 13, 2013
I mentioned it to the Public Health nurse at a checkup. "Perhaps check with your doctor," she said, unable to identify the rash.
So we didn't rush because he wasn't bothered. But a couple weeks later I left the doctor's office ashen-faced clutching a long list of test requisitions and specialist referrals in my hand.
I remember that night sitting at a book club meeting (one of the last I would go to as the coming months became consumed with medical appointments) and telling the other women "this is ridiculous. There's nothing wrong with him!"
And there isn't. Not really. We are SOOOOOO fortunate that his disorder so far has presented as mild. But in the coming weeks we learned a lot about what could happen: now, in the future, hopefully never.
Eventually Emerson was diagnosed with Neurofibromatosis Type 1. Genetic blood tests confirmed it.
And on that day, as I looked at the report, I made myself the same promise I made when I first heard the words, or when I held him down for yet another blood test, or when I contacted relatives to ask about medical history -- we will fight this.
The thing is, there is no cure and there's hardly any treatment. I've since met so many brave people with this disorder and the common theme is that you never know what will happen, but when it does happen there's little that can be done about it.
I want to change that. I want to change it in his lifetime. And I can't fight this disorder on my own. We need money channelled to research to discover treatments and uncover causes of some of the complications.
At some point "fighting it" turned into "raising money for research" and the marathon dream merged with this determination.
When I run the marathon in September, 2014, Emerson will be six years old. So I've set $6000 as my goal. I have contacted a research clinic and we are in the process of identifying which specific project will benefit most from this infusion of cash.
Running a marathon seems like a difficult task. So does raising $6000. But the most difficult task is looking at my beautiful child and knowing that at any moment a complication could curtail his happiness, or unthinkably, end his life.
So why $6000?
-Because he deserves it
-Because I believe I can do it
-Because it will pay for 3 months of research from a graduate student.