Emmi is a happy and determined one-year-old from Cartersville, Georgia, where she lives (and enjoys lots of cuddles) with her mom and dad, Abby and Brent, and three big brothers. Emmi loves playing with her brothers, going on adventures, and her stuffed llama. This month’s “Celebrate Always’ t-shirt is inspired by Emmi’s journey.
We invite you to watch her video, read her story and subscribe to our podcast to listen to an interview with her mom.
In 2020, Abby and Brent Wilkey were surprised to find out they were adding another member to their family of 5.
During each of the pregnancies with her three boys, she always felt sick, but this time around, catching Covid made things worse. Around the same time, Abby started experiencing some complications. Abby shares,
“I was bleeding profusely and we thought I had miscarried. I ended up going to the emergency room and we found that the baby was okay but I had a massive fibroid. From there we watched it really closely but the fibroid continued to grow as the baby grew. Sometimes it would even block the anatomy scans. We ended up doing an amniocentesis, an MRI, bloodwork,and many other tests–it was nonstop. Then one day, the doctors came back and told us that our baby may have a club foot, but it was hard to see.” Other than a potential club foot, they had no reason to suspect anything more after the extensive prenatal testing.
On April 21, 2021, Abby ended up having a c-section and finally found out that their sweet surprise baby was a girl.
“Looking back, I knew there was a lot of nervous chatter going on, but I didn’t think anything of it at the time. A pediatrician then came over, very gently, and said ‘you’re baby looks different and I just wanted to warn you of that. I’m going to have your husband come over and show you a picture.’
I figured that she must have a club foot but then they showed me the picture -her little legs were stuck up by her head and her knees appeared to be on backward. I was in shock and had so many questions.”
They ended up taking Emmi in an ambulance an hour away to the closest children’s hospital. At that time, Abby and Brent never expected that Emmi would end up spending the first 38 days of her life there. Looking back on that time, Abby shares,
“I didn’t get to hold Emmi until she was two weeks old. At times, I didn’t even feel like her mom and I wondered if she knew who I was. We didn’t know anything at first, but as we spent time in the NICU, we finally began to learn about Emmi.”
Along with learning that Emmi was born with a broken femur, the couple learned about the unique traits that make Emmi who she is. She was born with Micrognathia which caused her jaw to sit too far back. She has long fingers, contractures in her hands, and her knees were hyperextended.
“We also learned that Emmi’s heart was in the middle of her chest, which wasn’t that big of a deal but it was another unique finding all pointing to a syndrome of some kind. We were on a journey to getting Emmi the best care that she needed.”
Around the time Emmi was 2-weeks old, she had her first surgery, a mandibular distraction.
“One day, in the NICU, Emmi desat into the 30s and turned blue right before my eyes. I was terrified as I watched them bag her. The next day, she had a life-saving surgery on her jaw because the Micrognathia was causing her to choke on her tongue when she swallowed. The surgery was one of the craziest things I had seen in my life.”
While in the NICU, Emmi was also diagnosed with a condition called Arthrogryposis which involves a variety of non-progressive conditions that are characterized by multiple joint contractures (stiffness) and involves muscle weakness found throughout the body at birth. While receiving this diagnosis was a step in the right direction, it still didn’t explain why Emmi is the way she is. From there, the family did lots of genetic testing but everything continued to come back normal. In the meantime, Emmi was scheduled for a g-tube. Abby recalls,
“Since Emmi had to be sedated, the geneticist ordered an MRI. With Covid regulations, I was at the hospital all alone and I will never forget when the geneticist called and told me the MRI showed Emmi has Polymicrogyria. I felt like the wind had been knocked out of me.”
Polymicrogyria, meaning “many small folds”, is a condition characterized by abnormal development of the brain before birth. The geneticist told Abby that this explained the Arthrogryposis and why Emmi never moved while in the womb.
“Emmi had just gotten out of surgery and I remember sitting there looking at her when the doctor told me that ‘what she does now is all she will ever do’. Pure devastation took over me because at that time, she wasn’t doing anything. It felt like a death sentence in some way. In the background, I was grieving heavily over that, but while I was in the hospital, I decided that I was going to act like he never told me that. Nobody is going to sentence my child like that. The official diagnosis didn’t change my girl. Emmi was born this way and I refused to believe she has reached her full potential. However, it was a journey to get to a place of full acceptance.”
Once Emmi started seeing a neurologist, the family began to find hope. “After telling the neurologist what that doctor had told me, he reassured me that nobody can ever tell Emmi what she can or cannot do. There are hundreds of children with Polymicrogyria who all do different things and he’s right.
Emmi has proven time and time again that she can do anything. We are so proud of her because she is a miracle and truly remarkable. We wouldn’t change her if we could because she has changed us. We are not who we were a year ago and it’s for the better.”
More recently, Emmi had surgery to fix her dislocated hip. She is currently in a spica cast. While the cast limits what Emmi can do, she is never short of entertainment thanks to her three big brothers.
“Brent and I couldn’t do this without them. They help do everything with her. Emmi has to be suctioned constantly and my youngest son, who is only five, pleaded for me to show him how to suction her. They really want her to be her best self. They treat her like she is typical and I know in the bottom of my heart she will get to experience whatever she wants in life.”
Emmi is dotingly known as being the cutest, happiest, and most loving little girl. Despite facing so many obstacles in her first year of life, she continues to find and experience joy.
Time to get loud shouters!
Throughout the month of June we will be shouting loud for Emmi!
So click here now where every purchase in June will be used to build a handicap accessible shower.
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