According to Facebook memories, two years ago today madforlife.org went live to raise the funds my mother would need for her post transplant medications. I was in Pittsburgh at the time and distinctly remember sitting with my parents at lunch - the 3 of us all glued to our phones because we were continuously getting notifications that friends and family were commenting, donating and sharing. We laughed at that fact that we were “those people” - three of us at a table, staring at our screens.
It seems like yesterday, but the last 2 ½ years or so have been a rollercoaster.
Mad for Life was, in many ways, our family’s lifeline. The outpouring of support while Mom waited for her double lung transplant and then waited to come back home was incredible and kept us all going. This may seem like a strange analogy, but it was almost like a living wake. While the medications that kept her new-to-her lungs working were ultimately too much for mom’s body, they gave us extra time with her. But when we did lose her, everything people said to us about her was exactly what they had said to our family in their phone calls, emails, texts, and messages during that waiting time. That was truly one of my bright points in all of this. Mom knew how much she was loved.
And soon - because of the incredible generosity of family and friends - the Scleroderma Foundation will get a sizable donation from the Mad for Life Fund. While it will never be the same as having Mom here with us, we’re so grateful that it is possible that advances can be made in Scleroderma research because of our friends and family… because of her.
As often as possible, we'll try to update this page to let you know how Madeline is doing and where she is in her fight for new lungs. Visit often!