This month’s guest blogger comes from a mother whose son was diagnosed with SMA almost two years ago, Lynne Vaudry. Meet Evan!
I am honored to write as a guest blogger for Alyssa. As a mother of a young child with Spinal Muscular Atrophy, I have learned so much and been inspired by Alyssa’s posts. My son, Evan, was diagnosed with SMA type II at 2 years old after many months of doctor’s appointments and testing. Although it wasn’t easy news to hear about his diagnosis, my husband and I always tried to remain positive. I did know of a young lady in my own hometown who had Spinal Muscular Atrophy so, a few months after Evan’s diagnosis, I wrote to Alyssa Katherine Silva. I asked her if we could meet to talk, and she answered my request the same day I wrote with an enthusiastic, “Yes, I’d love to meet and chat!”
My husband, Steve, Evan and I met Alyssa and her mom, Dori, at a local coffee shop one March afternoon. Evan was wheeling around in his little manual wheelchair while the adults all chatted over coffee and donuts. We talked about how we shared the same doctors and how much is known about the disease today. Alyssa also reflected on her time in school and how important it was for her to play and socialize with friends. She told me about her wonderful experience of having a service dog and where the most accessible beaches were with beach wheel chairs and playgrounds for Evan. I went home that day with a new feeling of HOPE which was exactly what I needed at the time.
My husband and I still took Evan’s diagnosis one step at a time in order to fully understand all we could about SMA. We connected with the organization, Cure SMA, and read their information for newly diagnosed families. We learned about the appropriate physical therapy, equipment and home modifications necessary for a child using a wheelchair. We attended our first national conference for SMA in Washington DC, the same one attended by Alyssa and her family. We even joined the fundraiser committee for Working on Walking created by Alyssa.
Evan is now four years old and doing well. The shock of his diagnosis is gone as we’re focusing on doing the best we can for him as parents. Even though Evan uses a wheelchair, he wants to do the same things his peers do, just in a slightly different way. Evan swims, goes horseback riding, sledding, ice skating, and will try skiing next year. He’s not afraid to try anything!
During these past several years with Evan, I’m grateful that Alyssa started Working on Walking because it’s helping to raise money for SMA research, create awareness and provide hope to my son and others afflicted with this disease. Thank you, Alyssa.