The most authentic thing about us is our capacity to Create, to Overcome, to Endure, to Transform, to Love, and to be Greater than our own Suffering!!
Donation of All Capacities
While at the top of our list is the goal to help everyone through education and awareness to understand "WHY" they should feel a sense of "social responsibility" to recycle their bodies if they are able. While human beings innately feel called to "help" their neighbor, many people, if not exposed to a particular cause, do not seek out opportunities to "help". Our family is a perfect example of this, as before Evan's diagnosis and fight, we had NO IDEA of the need for donors of all capacities, or that we could be part of this life saving cause.
On May 1, 2007, less than 24 hours from his first symptom, a seizure, we were given NO HOPE, as Evan was diagnosed with Adrenoleukodystrophy
, a genetic metabolic disease with a terminal diagnosis. 24 hours later we had HOPE for Evan with the possibility of Bone Marrow Transplant. We had two cord blood donors, who through their donation gave us HOPE, as well as dozens and dozens of blood product donors who allowed Evan to go through treatment.
After our loss of Evan and the treacherous grief journey that ensued, our daughter Mary gave HOPE to another little boy, whom we met at the Minneapolis Ronald McDonald House
, by donating her kidney to him in May of 2008. One family, who went from being "perfectly normal" one day, to having their lives turned upside down and living the worst nightmare a family can have, has experienced the hope of donors in all capacities, and has made the decision instead of cowering in the corner of despair, to share their journey and encourage others to "give HOPE to patients and families in need".We Support Other Like-minded Groups
During our "Fight for Evan" and beyond, we learned that through our own trials an tribulations, we have the capacity to "help" others even in the midst of our own agony. In fact, "helping" others helps us move through the lifetime of grieving we will endure after our loss of Evan. We have met many families just like ours, as well as those that have had successful outcomes and chose to have the "pay it forward" mentality in their new lives. We have also encountered amazing individuals who just "get it".Patient/Family Support During Diagnosis, Treatment and Beyond
Whatever this looks like for your family, we have a huge network of families that can be matched with your family to help you through your journey. Be it another family whose loved one has the same diagnosis, is going through the same treatment, palliative care (meaning comfort/quality of life care for chronically ill patients), end of life care, or whether you are celebrating remission or cure, or grieving a loss, we are here for you
.Other Causes Near and Dear To Our HeartsView Links