I hate Maple Syrup Urine Disease. I hate that it has prevented my daughter from being able to enjoy the basic freedom of eating whatever she desires. I hate that it has forced the inconvenience of having to mix and drink a horrible tasting medical formula on her every single day. I hate that something as small as a cold, or going through puberty, can throw her into metabolic crisis. I hate that there's always that 800 lb. gorilla in the room, that this disease could kill her.
After the transplant, all of these aspects of MSUD will no longer be a factor. We will be taking on new responsibilities, of course, to ensure that she does not reject her new liver and will go on to live a long life, with that new liver.
However, what I hate most about MSUD, something that will not be 'fixed' by a transplant, is that it is a thief.
Because of MSUD, Anna had some of her cognitive abilities stolen from her. MSUD also stole the ability to speak clearly, with no impairment.
MSUD did the equivalent of dipping her brain in battery acid. If it was a person, rather than a disease, would that be attempted murder?
Even after the transplant, she will always struggle to read, school will always be a great challenge.
Yet, there is one thing that MSUD hasn't stolen from her. It has not taken her love, her joy, her compassion. It also hasn't stolen her life, as it has many others. As a mother, I will always fight to be sure that MSUD will no longer steal anything from my daughter.
After the transplant, all of these aspects of MSUD will no longer be a factor. We will be taking on new responsibilities, of course, to ensure that she does not reject her new liver and will go on to live a long life, with that new liver.
However, what I hate most about MSUD, something that will not be 'fixed' by a transplant, is that it is a thief.
Because of MSUD, Anna had some of her cognitive abilities stolen from her. MSUD also stole the ability to speak clearly, with no impairment.
MSUD did the equivalent of dipping her brain in battery acid. If it was a person, rather than a disease, would that be attempted murder?
Even after the transplant, she will always struggle to read, school will always be a great challenge.
Yet, there is one thing that MSUD hasn't stolen from her. It has not taken her love, her joy, her compassion. It also hasn't stolen her life, as it has many others. As a mother, I will always fight to be sure that MSUD will no longer steal anything from my daughter.