I was lying in bed one night and for some reason I remembered Jose. A fellow Pompe patient, I was privileged enough to get to know Jose through the GSDnet mailing list. He’s one of the good fellow’s who’s always generous with his advice and opinion.
On Nov 6th 2002, Jose passed away. From what I know, his vent broke down and no one was with him during that time. He eventually suffocated. Tragic…
Although I haven’t met Jose in person, I still felt like I lost a friend. There’s a certain kinship I guess with fellow Pompe patients. Jose shared his life with fellow Pompe patients and so in a sense I felt like I knew him well.
Jose’s death shook me a lot. It could easily happen to me. It’s such a tragedy to lose your life in that way. It doesn’t make sense at all…
I’m lucky that I have a lot of people around me. Still the fear is there. Sometimes I lie in bed and find myself thinking that what if my machine failed and no one is there… I soon find my heart racing because of the thought.
I guess this is something I together with other Pompe patients have to live with. While I have this fear, I try not to let it take over my life. I take the precautions in order to prevent it but at the same time I try to live my life as normal as I can.
Jose, if you’re reading this. I’m thinking of you buddy… I hope you’re happy up there and Pompe free. I’ll see you up there but hopefully not for a long time… I still have a fight down here and I don’t intend to give up anytime soon.
Fight Pompe!