Perhaps the worst feeling is hopelessness. That is how I felt when I had two children diagnosed with Oligo within 2 years. The disease was incurable and, eventually, going to take their lives. I didn’t know anything about cancer or medical research or fundraising. But I knew I had to do something…I had to try.
That was the beginning of a long trip from hopeless to hopeful…and years later to optimistic. The power of action and seeing the impact of our efforts has created so much positive energy and belief for our family that I think it is the primary reason we are functional, mostly happy, and even grateful people today.
Of course, funding research and helping to get the world to care about our disease helps. But the fundraising, incredible support from friends and family, getting in touch with folks I haven’t see for years, are all gratifying and fun and humbling. It helps me and, more importantly, it helps my family. To quote my son Zach : “So much of the love Spencer and I feel comes from people we hardly know, but who know you and want to donate their prayers, thoughts, or money to help propel us through this.”