June 29th, 2010. Makayla was diagnosed with Myclonic Astatic Epilepsy. As her neurologist explained, there are three different types of epilepsy: good, bad and ugly. Makayla has ugly. We were stunned, relieved, confused, concerned, angry; you name it, we felt the emotion all at once. Makayla’s diagnosis has started her and our family on a long journey. The journey has many twist and turns with highs and lows.
The day we became parents was one of the happiest days of our lives. I remember it still like it was yesterday and how proud I was. I remember the outfit Makayla came home in, the first hours and certainly that first night. As a parent I expected to teach Makayla everything I could. I never imagined that Makayla would teach me more then I would teach her. Makayla has taught me how to laugh, smile, love, cry and so much more. Makayla has taught me life isn’t always as you envisioned.
Makayla had her first seizure on July 4th, 2009. Seven days earlier Makayla had just turned one. As she was eating a snack Makayla had a seizure, which caused her to fall back, hit her head and begin to choke. Melissa called 911 while Makayla’s aunt was able to dislodge the object. Throughout 2009 and 2010 Makayla experienced many seizures; and of varying type. In 2009 and early 2010 Makayla had numerous EEG’s. Each EEG came back negative or normal. We thought that was a good sign. However, Makayla kept having seizures; as many as 30-40 per day that lasted for 7-10 days with each seizure varying in time from 2 seconds to 5 or more seconds.
Today Makayla is a 4 year-old beautiful, fun, loving, smart, determined, stubborn, committed little woman. Makayla takes seizure medicine daily which helps suppress the seizures most of the time. Makayla's doctors don't know a cause nor can they tell us what the future will hold for Makayla. Makayla loves books, dolls and annoying her younger brother Brayden. She smiles and giggles around her baby sister Makenzie, giving her lots of hugs and kisses. Makayla attends day care and Edina’s Early Childhood Special Education (ECSE) program. Makayla has made many great strides since her diagnosis and since she started with the program at 19 months. Those strides include her first steps right before her 2nd birthday and first word when she was 3 years old. Makayla now says mommy (a lot), pop pop, nana, up and a few other words. I cannot wait till she says daddy…loud, clear and a lot! I never imagined that word would mean so much.
On Sunday October 7th, I am running the Chicago Marathon. In doing so I am hoping to raise some funds in honor of Makayla and for ECSE. ECSE has done an outstanding job working with and providing resources to Makayla, our family, and many others in their own journeys. We appreciate any donation you may be able to provide.
Michael, Melissa, Makayla, Brayden and Makenzie Levy