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Laci Buller-Berwick hasn't added a story.
Instead of talking about what I don't have, I'd much rather tell about the people who have helped us already. First our family, my sisters, parents, grandparents, numerous cousins, aunts, and uncles have all been there for us in once way or another over the last 4 1/2 years. They gave bought us food, brought diapers, paid for gas, and offered me a chance to just take a nap. There have been friends of myself, my family, and friends of friends who have been willing to lend us a hand without me ever having to ask for it. The most touching of all have been the strangers who have come from no where to help us. The last 6 months have been very hard on Maximus and by proxy the rest of us. There has been more than one time when I was down to my last dollar, diaper, can of soup and someone sends us a card or a package that helped us make it through for another few days.
We, are not special. Our battle isn't any harder than any single mothers, or any family with a special needs child. We don't suffer more, sacrifice more, or go with less than countless other families in America. Our struggle is minimal compared to what families in other parts of the world face. Maximus has quality medical care by caring doctors. That is not a luxury that every child has. I try very hard to remind myself of what we DO have, not what we go without. I try and teach Maximus' brother and sisters that we truly are lucky to have a home, food, medical care, and freedom.
I can't ask anyone to donate to my family. It doesn't seem right considering all that has already been given to us. I would feel horrible that my family is helped when others aren't. I realize that because I've made Maximus' battle one that can be followed by others, people feel compelled to encourage us in all sorts of ways. I write about our life as a form of therapy for myself, and for a sort of historical record of the extraordinary life of my baby boy. I know that Maxs life will be a beacon of hope to others one day. He is a miracle of science and of humanity. Right now, however, he just keeps going into the app store on my phone.
If you have read this and decided that you would like to support me and my children in our life, thank you. I truly wish that there was a way that I could look each person that helps us in the eyes and express my gratitude. If you would like to help all children like Maximus, please consider donating to the Organic Acidemia Association. The OAA is made up of families just like ours. They spread awareness of the importance of newborn screening and help fund research that may, one day, just make conditions like Methylmalonic Acidemia only a memory.
From All of us,
Thank you
Laci, Hailiey, Matthew, Juliana, & Maximus
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