The Indie (Special Needs) Dad

 Alastair at the PAX West Nindies Lounge

Alastair at the PAX West Nindies Lounge

With the Wii U version of AV released and the XB1 version in certification, I thought I'd take a moment to talk about my son, Alastair.  It's not something I talk about a lot because, basically, I don't want to make you depressed.

Over a year ago I posted, over-optimistically, the Alastair had returned from the Neonatal ICU mostly unscathed.  I was very wrong.  I don't want to deluge you with details, but, to put it in simplest terms, my son has Kernicterus, which you get when your doctor doesn't treat newborn jaundice on time.  His mind is completely functional but his motor control is extremely damaged, so his movements are either super stiff or super random. He can't sit up or crawl, and it's doubtful he'll ever be able to walk.  He might be able to play video games one day with eye tracking software or the like, but probably not reflex intensive games like Axiom Verge.  He can eat but can't pick up food or even bring his hands to his mouth unassisted.  He will eventually be able to hear - after a cochlear implant surgery he's undergoing in a few weeks - but everything's going to sound like an 8-bit NES sound sample.

There are basically no approved treatments for Kernicterus in the US, which leaves unapproved treatments.  He received a bone marrow stem cell transplant in Mexico (your stem cells become classified as a drug by the FDA once they leave your body, hence why it's not allowed here).  So far if we've seen any improvements, they're very minor.  Nothing like you hear about celebrities like Gordie Howe,  John Brodie, or Bart Starr who could walk after stem cell treatments.  There's no way to know if this is because Kernicterus is just that much worse than other brain injuries or if it's that I would need to bump up to embryonic cells, which can cause tumors, and which they won't use on children even in Mexico. We also got him a hyperbaric chamber which, according to recent studies, leads to improvements in patients with cerebral palsy, though kernicterus is rare enough that it's not part of those.  We've also heard of other children using thc/cdb oil with a lot of success (in 2 cases even restoring the hearing of all things), so we've begun the process of applying for a medical marijuana card.

None of these things are covered by insurance (which, being an indie, I need to pay for in full), so you can imagine how thankful I am that Axiom Verge can support the tens of thousands of dollars this is costing.   We have also begun a malpractice lawsuit - but this is a years long process that is just in its infancy, and may not really cover the overall costs anyway.

 Alastair's First Birthday

Alastair's First Birthday

I wish I could reciprocate what Axiom Verge and its customers have done for us.  But I don't get that much time to field questions in the comments, Steam forums, or Facebook.  To be honest I don't even get to work a full 40 hour week, even though I work at home now.  We regularly see a number of therapists and doctors - a physical therapist, an occupational therapist, a speech therapist, a feeding therapist, 2 audiologists, a neurologist, a GDI doctor, various surgeons - as well as the associated scans and tests.  It's hard to stay focused on anything for very long with so much going on.  I've become that flaky person we all know who agrees to do something but then never replies to urgent mail about how the deadline is tomorrow and nothing's been done.

A lot of people say, "don't worry about work, focus on your son" - but bear in mind my work is directly correlated with my son's well being. Rather than just being a hobby, Axiom Verge (and whatever else I do in the future) has now become necessary for supporting him and his medical needs for the rest of his life. 

Thanks for understanding.