A couple weeks after we came home with our angel, we noticed that her left arm was not moving very much. Afraid that maybe something happened at birth that we did not know about, we decided to closely watch her movements. By her 6 week check-up, we mentioned to the doctor that she seemed very "floppy". Kennady no longer wanted to hold her head up and would cry through “tummy time”. She was not moving her legs very much and did not seem to want to move her arms to play much either. Kennady also had fast and heavy breathing. We were expecting the pediatrician to tell us that we held her too much and cuddled her too long in our arms, and she needed more opportunity to move.  We loved to just sit down and cuddle Kennady, so that is what we did most of the day! But, instead of the doctor saying we needed more opportunity for Kennady to play, we were admitted to Children's Hospital in Milwaukee and found out our little angel had Spinal Muscular Atrophy, or SMA. We never had heard of this disease. We were devastated that our little girl had such a horrible, debilitating disease and prognosis. They told us it was unlikely she would live to her second birthday. It was a punch in the stomach, we cried for days. However, once we got past the initial shock, we stopped and looked at our little miracle. She was still the perfect, vibrant, smiley little girl she had always been. She was still so full of life, talkative, and full of grins. We decided from that point on that we would do whatever possible to make her comfortable and make her feel as special as possible. Her contagious smile lit up the room and our lives every day. She has been an inspiration to us and to countless friends and family members. She spoke millions of words without saying a thing. Her eyes and eyebrows said everything she ever needed to say.

Shortly after Kennady was diagnosed with SMA Type I, she lost her ability to eat and she had a G-tube placed for food to go directly into her stomach. She slowly lost other movements like being able to suck on a pacifier, and move her arms. Her breathing became more labored. We used a suction machine to clear secretions, a cough machine to keep her lungs clear and help her “cough”, and a pulse oximeter to measure her heart rate and oxygen level at all times. Kennady had a bipap machine to help her breathe at night, and ultimately, she depended on it 24 hours a day when she became unable to breathe on her own due to the progressive muscle weakness. 

Kennady started and ended each day with such a big smile. She was a very laid back baby and rarely ever fussed.  Her favorite things were cuddling with Mommy, Daddy, watching Mickey Mouse Clubhouse, the Disney Princesses, the movie “Tangled”, swimming, and playtime.  She loved anything that played music or lit up. Kennady got to meet Santa, went to the zoo, and even traveled to Florida to meet Mickey, Minnie and the Disney Princesses in person! We knew our time with Kennady may be cut short, but we promised to help her live her life to the fullest.  There is no heartache like losing your child or seeing them suffer through a debilitating disease like SMA.  However, if Kennady could wake up every day with a smile despite what she was going through, we could also wake up with a smile and be postive. Kennady deserved a positive environment and we wanted her to know how special she was and that she was the center of our world.

Kennady changed our lives forever and taught us so much about loving, living, and appreciating life. She was a perfect daughter, we could not have asked for a more precious baby. She had the strength of an entire army, yet was as fragile as a delicate snowflake. She has a place in our hearts that can never be replaced.

Just a few weeks shy of her 1st birthday, Kennady passed away in the privacy of our home.  Kennady was surrounded with the love of her mommy and daddy as God welcomed her into His world. We have felt a pain that no family should have to go through and we are dedicated to help find a cure for SMA. No child should have to go through what our daughter endured. She deserved to have a long, happy life. She should have been able to crawl, walk, run, jump and grow up to have a family of her own. We find peace that she is with God surrounded by a love that we can only dream of, and we look forward to being with her one day in heaven.  But for now we will continue Kennady's fight on earth. So for Kennady and for all the SMA warriors and angels, we would like to help fundraise to help find a cure to end SMA. We have hope that one day very soon SMA will find its cure and no more innocent children will have to lose their lives to this devastating disease.

We love you Kennady! Thank you for teaching us the important lessons of life.  Mommy and daddy could not be more proud of you, little angel.  You always have been and always will be the center of our world.  You are our perfect little miracle. Fly high, free of SMA forever. XOXOXO