Sunday, March 6, 2011

Mother Warrior

Today Keegan posted a piece about The Power of PWS Moms. This article brought me back to a conversation I had with a woman who lives in my neighborhood. She was organizing the annual neighborhood garage sale. I had never met her before but I called her and explained that my daughter has PWS and I am hosting a fundraiser. I asked if I could put my Go the Extra Mile fundraiser flyer on the back of her garage sale map. She was more than happy to help and invited me over to her house to discuss further.

While I was there I explained what Prader-Willi Syndrome is and how it is, and could, impact our family. She then told me about her infant son that died 20 years ago after receiving his 2 month immunizations. He suffered a fatal allergic reaction. After she worked through her grief she began lobbying for increased awareness of these side effects even appearing on 20/20 and testifying for congress to discuss the topic.

She then looked at me and said something that has stuck with me ever since....She said "We are Mother are a mother warrior for your daughter."

When we received Ellie's diagnosis almost 2 years ago I vowed that I would do everything in my power to make Ellie's life the best it could possibly be. To me, this means raising money for research. I want to get as much money to the researchers as fast as possible so they can research faster. I became a mother warrior the moment she received her diagnosis. I am engaged in a battle against the effects of Prader-Willi Syndrome.

I am Ellie's mother warrior....I always will be and will keep fighting for her independence by raising money. I am not a scientist so I can't find the cure myself so the next best thing, in my opinion, is to do as much as I can to encourage researchers to dig deeper into this disorder until a cure is uncovered.

(Shawn and I after our first run/walk: Such a proud moment for us)

I choose to raise money as my way of working through this diagnosis, I choose to contribute to her future, "I choose to believe!"

How do you deal with the diagnosis? How do you express yourself as a Mother Warrior? (Or father warrior:))

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