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| Wednesday, August 29, 2012 | | Hannah |
I didn"t know Mallory, but I do kind of know what it must have been like. I found out about Mallory through my friend, Jean Handler. Jean and I have the same very rare genetic disease called MSUD (Maple Syrup Urine Disease). We have been hospitalized often, and while I can only speak for myself, I know at least this much is true of her too. It is impossible to have our disease and not be hospitalized. I have also been in a couple comas, had to have dialysis and all other fun things hospitals have to offer. My disease also deals with the liver, and is in our bloodstream, which is why I am sorry, but I can"t donate an organs or blood. They still carry my disease. There is much controversy in the MSUD community regarding liver transplants as well. The disease can be fatal if not taken care of properly, and it"s very hard to take care of. I honor and admire yours and Mallory"s decision to go through with the transplant. I don"t think I"d ever be able to take the risk, though. I figure, if it"s God"s decision that I not be able to handle my disease well enough to keep on living, I"m going to die happy. Our disease deals with not being able to eat foods that I"ve always wanted to try, so I figure, when the time comes, I"ll have my own Last Meal. That"s how I"d want to go. But it"s also a little sad, because it just means that I"m not nearly as strong and courageous and hopeful as Mallory was. Sure, I"d be happy about finally getting to eat all that food, but I guess I"ll always know I am a coward, too scared to fight as hard as or at all like she did. That"s also why I wouldn"t want the transplant. I"d be too scared to face the possibility that something will somehow go wrong and I don"t want to have to face that unknown. So even though I never knew her, I want to say, to somebody at least, how much I admire her ability to face reality head on and try to make it that much better. Thank you for this gift, that I may find some strength.
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