Taylor Benanzer was diagnosed with MEF2C mutation, which is unique to approximately fifty known individuals across the world. Her mother, Megan, has graciously shared her story with the Little Light House.
“Taylor was born at thirty-nine weeks via cesarean section and was a healthy baby who ate and slept great. Taylor was breach throughout the entire pregnancy and her hip sockets didn’t fully form so she had to wear a pelvic harness for five weeks.
At six months, Taylor wasn’t rolling over so we started therapy. All kids develop at different rates and she had been in her in harness for five weeks, which didn’t allow much tummy time, so we weren’t too concerned about her delays. Taylor eventually rolled over and then progressed to sitting up by herself. Taylor continued in therapy and was very delayed in hitting milestones. She started to crawl a few months after her 1st birthday. We have the video of Taylor crawling for the 1st time. It was Facetime with my best friend and her kiddos. They were cheering her on and Taylor was chasing the phone. Knowing all the hard work Taylor had put into crawling made it that much more exciting.
Taylor was crawling, but it was still hard going to birthday parties and play dates, and seeing kids her age walking and talking. We left many parties with me in tears knowing how far behind Taylor seemed. I stopped following some of my friends on Facebook that had kids around Taylor’s age. It was too hard to see their kids doing things Taylor wasn’t even close to doing, and not knowing if Taylor would ever be able to accomplish those things.
When Taylor was 1 ½ and still not talking, walking or feeding herself, we knew that she had something more than just a developmental delay. This is when we decided to make the call to the Little Light House. Taylor’s little cousin is a current student so we had been to Mini-Laps to cheer her on, but that was the extent of our experience with LLH.
We scheduled our tour with Mrs. Lindsay. Seeing the classrooms, teachers, therapists and all the wonderful staff love on the kids as if they were their own was amazing. I knew this was the perfect place for Taylor. I couldn’t wait for Taylor to start but she was # 124 on the Waiting List; a wait that’s expected to be 2- 2 1/2 years long. Each month the LLH has a FLIP event held at the school. FLIP is a program for Waiting List families, designed to provide services and resources while parents and children are waiting. Each event focuses on a different objective and the staff shares with us what they do in the classroom and in therapy. Our first FLIP event to attend focused on literacy. They talked about reading and having your child pick the book. At this time, I thought Taylor would NEVER be able to tell me what book she wanted. They explained that communication doesn’t have to mean speaking, but that it can be eye movement and/or touch. I was still thinking Taylor wouldn’t be able to tell me what book she wanted. The therapist said to pick a book you know your child LOVES and one they don’t like as much. If they don’t pick a book, pick for them and pick the one they don’t like. After a few times of me picking Taylor’s least favorite book, she started to touch the book she wanted me to read. I called all my friends and family to tell them what Taylor was doing. That my daughter, who I thought couldn’t communication, was finally able to!! We just needed the tools to help us help her communicate. We started using this method for everyday life with Taylor. She was soon able to tell us if she was hungry or thirsty, what toy she wanted to play with, etc.
The LLH has a Christmas party every year for the students, and they invite all the families on the Waiting List. When we attended, Taylor was walking and kept making laps around the building. Each time we passed staff from the LLH, they made such a big event of seeing Taylor as if it was the first time.
Just days before Taylor’s third birthday, we received her diagnosis: MEF2C mutation. We received the results over the phone, so I immediately wanted to see what Dr. Google had to say. I couldn’t find a website, blog, walk, conferences, Instagram hashtags, nothing. We did find a MEF2C mutation/deletion private Facebook group. They have fewer than 30 kiddos (from the entire world) with this diagnosis, with the oldest being seventeen years old. We met with Taylor’s genetic team a few weeks later and they didn’t have much information. The genetic test has only been around since 2009. Here we had the diagnosis, the answer… but it couldn’t tell us anything. At the beginning, it was tough not knowing what therapies would help best, if the seizures would get worse, if Taylor would eventually regress; all the answers I thought we would get with having a diagnosis. Some days are hard, thinking about Taylor’s future and how we will handle having a forever child. However, most days are GREAT. Knowing how much our friends and family love Taylor and how much joy she brings everyone. We have seen Taylor grow so much in the last three years and can’t wait to see the story she writes.”