2017 Northern California Walk-n-Roll
Golden Gate Park
Welcome to Monessa's Fundraising Page!
Buenas (that's a Chamorro greeting)!
You've made it to this fundraising page and if you know me, you probably know why I walk every year for Cure SMA's Walk N Roll. And if I've never shared my story with you, it's not because I haven't wanted to. I love to talk about my Rhys - just ask. You can also learn more about our life with Spinal Muscular Atrophy (SMA) at www.liverhysstrong.org/about.
Four years ago, on August 24, 2013, my husband Blaise attended his first Walk N Roll. Many encouraged me to go, but I couldn't bring myself to leave Rhys' side. He was in the Pediatric ICU on a ventilator with an NJ tube down his nose for nutrition. The hospital was less than 2 miles away. I was pumping every 2-4 hours to give him the best nutrition possible. I just couldn't bring myself to leave him. We said goodbye to him 2 days after the walk.
SMA is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. There is no cure for SMA however just this past December a treatment for SMA was approved by the FDA for the first time ever.
We've had such great support the past four years from our family and friends. This walk means a lot to Blaise and me. We would be most humbled and grateful for you to support us through a good deed, volunteer, prayer, donation or participation in honor of our Rhys.
Thank you for taking the time to learn more about SMA and our family.
Still very thankful,
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