Welcome to my author website. I've always kept my writing to myself until I had a reason to share. Using my journals and notebooks, I published, See You Now, my first book to keep my son's memory alive. When Shane was only 8 weeks old, doctors told my husband and me that Shane had a terrible disease called spinal muscular atrophy. They predicted that he would die before he was 2 years old. What a horrible prediction to lay on a tiny baby. Always a contented baby, he ignored their predictions. He lived! He never let that diagnosis defeat him. He taught everyone who took the time to know him how living to the fullest is the only way to live. My memoir reads like a medical thriller, because we lived on the edge of life and death. Shane triumphed with the help of medical machines, some crazy nurses, and even crazier parents.
We hope our story inspires you as much as living with our Shane Shine inspired us.
Give it a read.
What can we do to help those battling spinal muscular atrophy?
If you have a heart to assist in the research toward a treatment or cure for spinal muscular atrophy,
For those newly diagnosed please join our parent support group on Facebook. There is a new treatment for SMA called Spinoza. This injection corrects the deletion of a gene that creates the protein needed for normal muscle movement. Thankfully type 1 infants are able to live without mechanical ventilation. Spinraza was approved too late to help our Shane shine.
After caring for my son, I want to help other families and children. I know about: special needs parenting, caregiving, spinal muscular atrophy, Werdnig Hoffman, ventilator dependence, home health nursing, scoliosis, colitis, surviving neuromuscular illness, super nutrition, pediatric paralysis, non-verbal communication, homeschooling, technology helpers, memoir writing, and grief.
My ebook has tons of information about living with SMA. Thank you for visiting!!