Today's interview is with a young man who has had a lot on his plate, to say the least. I'd like to welcome Blaine Colton, the hero of the new novel "Integrate" by Adele Jones. He's actually had a remarkably eventful life, but the last few weeks have been especially challenging. I'm glad he can come and share with us, considering what he's going through. Welcome, Blaine.
You suffered ill health when you were young. What was your diagnosis? And what treatment were you given that saved you?
I was diagnosed with mitochondrial disease before I can even remember. Basically mutations in my DNA mess with the function of my mitochondria – the powerhouses of my cells. Mito varies heaps. It doesn’t just have to be the mitochondria themselves, but associated processes – heaps of things can mess it up. Even people with the same mutations can be affected totally differently.
My mutations happen to be a pretty mean combination, plus it affects both my mitochondrial and genomic DNA. This caused lots of problems for me, like shattering fatigue, neuromuscular issues, being stuck in a wheelchair from a young age, seizures, risk of organ dysfunction or failure, loss of speech, majorly reduced life expectancy – plus many people assumed I was mentally impaired, which is a risk with my kind of mito.
Thankfully Professor Ramer, from Advance Research Institute (ARI), developed this gene therapy that repaired the mutations. I’ve done heaps of reading and I’m still not fully sure how he did this, and the Professor couldn’t tell me all the details – some commercial-in-confidence thing. But it’s pretty mind blowing once you start thinking about all the steps he’d have to factor in.
Whoa, I could just follow that explanation. You've had a rough time. Thanks heavens for Professor Ramer and his life-altering modern technology. But what happened at the post-treatment appointment before your birthday?
Get this, I’d had my 33-month post-treatment follow up and all was good. Then a few weeks later Dr Hartfield, the Chief Scientist and Director of ARI who replaced Professor Ramer, calls saying I’ve got to come in. Said she needed to discuss some important issues relating to my therapy. So I went. Then during the consult she got all, ‘You’re illegal! Professor Ramer didn’t get the right approvals for your therapy. You can’t leave ARI until I work out what to do!’ Serious?
So that was the start of what you've been going through recently? Who was holding you against your will? How could they possibly get away with it?
As I said, Dr Hartfield started the whole thing, but she also has a research team on it. Had me ‘isolated’ – took my phone and everything! No calling my parents unless she says, not giving me the right meds. It’s insane! Apparently she has to work out how to manage my case with some overseeing body first and see if I can be ‘downgraded’, but if they get involved before then, she says it could go really bad for me. Figured my parents would be pretty freaked if they knew, and they’ve been through a heap because of me already (I’m adopted, too), so she wants to keep it low-key until she sorts it out.
What made you decide to take matters into your own hands?
Well, Dr Hartfield was saying if she can’t change my status I could spend the rest of my life ‘contained’. I don’t think so! Plus she said other stuff about my parents that’s got me wondering. But there’s something else that worries me, too. Professor Ramer’s disappeared and now all this has blown up. What if he knew all along the therapy wasn’t okay? Apparently it’s a pretty big deal in the science world if you’re making illegal GMOs – especially being one of them! To live, I need answers now.
Staggering to think you knew nothing of all this until now. Can you tell us more about Dr Melissa Hartfield? Is she on your side, with your welfare in mind?
Dr Hartfield says she’s got my best interests in mind, but one minute she’s like all concerned and the next she’s all business, as if I’m nothing more than another experiment to her. Plus she talks all this stuff about my gene therapy, but from what the Professor has told me, it doesn’t add up. Weird, right?
Sure is. It sounds like your only hope is to find Professor Ramer, but he’s vanished. Where are you even going to being looking? Have you any leads to go on at all?
Wish I knew. Mum and Dad would say pray about it, but I’m not really sure what I think of all that right now. There’s also this girl, but ... well, that’s a whole other part of the story. First thing is to escape Dr Hartfield and her rat pack. Even though she says I can trust her, my health’s gotten really bad and she’s not done anything to change it. I actually think she doesn’t know what to do. So I’m not taking any chances, or I could be dead before my eighteenth!
I'm afraid that's all Blaine had time to share, but we surely wish him all the best in this impossible sounding quest. To find out what happens, you have to read the book, and Adele is offering one free copy to a randomly selected visitor who leaves a comment on this post.
(I've finished the book and his story is well worth reading! My review of the book will up on Wednesday.)
Adele Jones lives in Queensland, Australia. She’s had a variety of short works published and has two novels scheduled for release in 2014—a YA SciFi and a historical maritime romance. Her writing is inspired by a passion for family, faith, friends, music and science – and a broad ranging imagination. To find out more visit www.adelejonesauthor.com