Phoenix UPDATE: 2-2-2021. Wow! That’s was a long time ago, BUT, Luckily, we are still here! Phoenix is now 18 years old, and while we loved him being able to push his chair around the house he can no longer do that. He actually isn’t really even strong enough to control an electric chair with standard controls. He would be able to control one with proper assistive equipment, but Im not sure I would trust his judgment in certain situations. Phoenix Is also on a ventilator 100% of the time. We were in a Gene Therapy trial here at University of Florida and we actually saw some modest respiratory gains from that trial, but the effects were short lived and we are back on the ventilator all the time. The GT trail was more of a safety trial than an effectiveness study. Phoenix still can breath on his own but maybe only for 20 min or so. And while he is weaker then he was when he was 2, he is able to use a head tracker to use his computer for school and entertainment. Its by far his favorite piece of equipment. We still go to Disney and the Movies and a bunch of other things, but currently we can’t because of COVID. Phoenix is receiving Lumizyme still and he is getting 20 mg/kg every week and so far we are hanging in there but it would be nice to see a new therapy hit the market soon! Thanks.
Photo taken at Disney Animal Kingdom Feb 2020
