Miles for Wyatt
Miles For Wyatt
On November 11th, 2020, I awoke to the neurologist calling with the results of Wyatt's MRI. Braced for the worst, hopeful for the best, we got the most shocking news of our lives.
"Lissencephaly" she said. Without skipping a beat she continues on, "comes from the Latin term meaning smooth brain. Wyatt's cells in his brain never migrated from the center of his brain in order to form all of the folds and grooves that make up the brain." The information kept coming. Still not realizing the severity of it all, she continues on, "Significant developmental delay." And then the kicker, "Most children won't develop mentally past the infant/toddler stage."
"Wait," I interrupt her. "You're telling me my son will act like an infant his whole life?!"
"In Wyatt's case, his brain is almost all smooth, so yes, most likely," she replies.
I will never forget the details of that day. Where I was, what I was doing, the emotion, the gut wrenching pain, calling Matt at work to tell him the news. It's so clear and seems so fresh in my mind,. Would we ever smile again? Would our hearts ever stop hurting? We went to see our pastor later that day and talked to family and friends. Our pastor advised us to continue doing the things we love and encourage each other to carry out our passions.
Matt's passion is building his hot rod and mine is running a marathon. That day, I decided to run the Nationwide Children's Marathon for Wyatt.
My friend Amanda came up with the idea of a blog and team name, Miles for Wyatt. I loved the idea and now I get to carry it out!
Not only are the miles actual miles, but also the miles of our journey alongside our sweet little baby boy. It's been a rollercoaster for sure, but we've watched him grow and accomplish so much in his short little life so far. We couldn't be more proud of him. He smiles and giggles and he brings joy to everyone around him. He just started to hold on to a spoon and does tummy time like a champ. We are working on rolling over and sitting and he is so close! Despite this being such a terrible diagnosis, we have seen a lot of good come out of it. The amount of support we have received from family and friends has been immeasurable. We thank them and love them so much. We also thank God for placing Wyatt in our lives. We truly feel that God hand picked us to be his parents knowing we would always give him our all.
During Wyatt's journey, he developed seizures at 4 months old and infantile spasms at 5 months old. Infantile spasms are a very subtle seizure, often confused with voluntary movements or reflux. Despite being subtle, they carry huge consequences. If left untreated, they will cause regression and brain damage. They are most common in children with neurological issues, but a perfectly healthy child could get them and revert back to infancy. The crazy thing is, not one of my friends that have children (actually not one person that I know) has ever heard of them! Thankfully we knew what to look for and caught them early before any damage was done! Since this happened I have become extremely passionate about spreading infantile spasm awareness. I would like to raise money to donate towards infantile spasm research and awareness, through Nationwide Children's Hospital.
Any contribution, big or small, would help greatly with research and spreading infantile spasm awareness. In addition to individual contributions, I will also be selling lissencephaly/infantile spasm awareness t-shirts titled "Miles for Wyatt." These t-shirts are $31 and 100% of the profits will be donated to the Neurology department of Nationwide Children's Hospital in order to help fund research and awareness for infantile spasm. If you would like to order a "Miles for Wyatt" t-shirt, please contact me at firstname.lastname@example.org. Child and infant sizes are available as well! Also, please check out the "Miles for Wyatt" facebook group page for more details on t-shirts, donation list, race details, and most importantly, Wyatt updates!
Thank you so much for all of your support! If Wyatt's diagnosis and story helps save just one child, it would mean the world to us.