Sweet Angels

Marilee moved across the street when I was in junior high. That was a terrible time for me. I was taller than all the boys, I was a goody-two-shoes who sat in the front row, and I wore too much self-tanner on my face, which nobody clued me in on until .... adulthood? Every day was pure embarrassment. I don't really remember having many friends either .... Until Marilee moved in. She and her family had just come from Olympia, Washington, a place that sounded so beautiful. I felt bad she landed in Roosevelt, Utah, but was secretly also really excited and hoped we'd be friends. I can't remember if it was she or I that initiated our first hang out: a bike ride around town. But we got along instantly and were close until she moved again near the end of high school. She and I would wake up early before school to go running (???). After school we'd end up in her basement singing really loud karaoke. When a local home-schooler, Miriam, came to school around that time as well, we three connected and called ourselves the MMMs. So cool. Sooo cool. We sang at church missionary farewells, we danced in the high school drill team, we crushed hard on lots of boys. We had the best of friendships.

Fast forward to marriage, motherhood, adulthood. The last I saw Marilee, she was living in Tucson and I was living in Phoenix. My kids and I drove the two hours south and stayed with her family for a few days. My kids played with her kids, Laya and Eli. She was pregnant with Evan. She had a backyard with a hose and playhouse and unlimited Icees. She told me about Eli and about how Evan might also be diagnosed with what Eli has. Awhile later I found out he had. I don't know what Marilee goes through emotionally on a daily basis, but I have a small guess. She and her husband Brad have turned their pain into something to help others. It is amazing to me to see them navigate an impossible situation with such grace, with an eye to the future of treating other kids with this fatal disease.

Marilee wrote and performs this song about her boys, and each download will contribute to funding research for a cure. Please take a minute and download on iTunes, Google Play, Amazon, Spotify, etc. Or you can contribute directly to the CureGM1Foundation, which all goes to finding a cure.



You can follow her blog for updates about their darling family and their efforts to help their children and others with the disease: GM1 Gangliosidosis Type 2 - Our Experience