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Who is Alex?Alex suffers from Tuberous Sclerosis, seizures, Autism, and very severe self-injurious behaviors. He hurts himself so badly that he can't live with us anymore. After the heartbreak of placing him outside the home, now we're having to fight an uphill battle for the medicine that may actually help him.
Tag Archives: update
This is a bit delayed, but we finally got Alex out of KKI and back to Oregon! He won’t be getting back on OMMP any time soon as his new home is over 90 minutes away from us, making daily … Continue reading
Well, after a lot of fighting we got Alex to the Kennedy Krieger Institute. It was a ridiculous battle, and shame on Providence for trying to deny somebody as obviously in need as Alex. Their initial denial was flimsy at … Continue reading
I’d like to say first and foremost that we wanted to thank all of our supporters. in the past few months, even with very few updates from us, we have received tons of emails and Facebook messages supporting us and … Continue reading
First, since surgery, Alex has been doing really well. This should not be the case from everything we’ve learned about the SEGA (the growth in his brain they removed), but we’re not going to complain. We’ve been told by doctors … Continue reading
We visited Alex on the way back from the grower, and he was doing pretty well, though he needs to be wrapped up, and is definitely wanting to do more running than he’s allowed to. The surgery definitely hasn’t slowed … Continue reading
It’s been suggested we keep the blog going as well as the facebook page, since a lot of people won’t follow the Facebook stuff, so I’m going to try and put up the longer updates and such here.
The interview is definitely going to air. We’ve even been contacted by somebody who saw a trailer for the interview. It was suggested that we put Alex’s story up on Facebook since it’s more visible there (and easier for us … Continue reading
In the past month I’ve missed something like 6 days due to various medical situations. First my father got incredibly sick and I actually expected I was going to be attending a funeral. Then my wife, kids, and I all … Continue reading
There’s still not a lot to say. Alex hasn’t been doing too great lately, and even when he’s in a good mood he has to be wrapped up in a blanket or something that can similarly restrict his hands, otherwise … Continue reading