Our Story

Our story begins on May 14, 1999 when we found out that we were going to be parents. The first sonogram revealed a little girl was on the way and that something was abnormal. A couple weeks later, a specialist told us that we were going to have a little boy born with a birth defect called an oomphalocele. An oomphalocele is a herniation in the umbilical region where the intestines grow on the outside of the body in a fluid- filled sac. They told us that it could be a two million dollar surgery with up to 6 weeks in the hospital and that there could be other major complications.

On December 23^rd, after a full day of Christmas shopping, my water broke and off we went to the hospital. On December 24, 1999- they induced labor and Brett (after KC Royals player George Brett) Jacob Wilson was born at 3:58 pm. I got to see him for a minute and hold his hand before he was taken to a special children’s hospital. His dad and Noni followed the ambulance there to make sure the transfer was safe and he was in stable condition. I was able to see him the next afternoon on Christmas Day after I was released from the hospital. Brett had a single-stage surgical repair of the oomphalocele at 3:00 pm on Christmas Day and everything was going great. We got to hold him for the first time when he was 4 days old! It was heaven! He was released to go home after only 9 days in the hospital. His incision healed well from the surgery and everything appeared to be “normal”.

At about 5 months old, we noticed that Brett wasn’t reaching certain milestones and was beginning to lose certain functions. He hadn’t done any weight bearing since about 5-6 weeks old. He began to lose the ability to lay on his tummy and hold his head up off the ground and could never roll or sit up unassisted. We made an appointment with a neurologist, but were not able to get in until August. In August, the neurologist we saw ordered tests- a MRI and an EMG, both of which came back normal. In early November, she diagnosed him with severe hypotonia, which he may or may not grow out of. I was furious that any physician would leave such a vague diagnosis and immediately seeked a second opinion.

We were able to get into our second opinion right away (December) and after a couple minutes of observing Brett, she wanted to do a blood test for a disease called SMA. With no further explanation of this, she ordered the test. I told her to call me at work with the results. After some minimal research on the internet, I assured myself that the tests would come back negative. Almost all of the information I could find was devastating and seemed almost hopeless. I still remember every part of that day, what I wore, whom I talked to at work after the phone call, everything- it was January 8, 2001 at 11:13 am. I hopped over to answer our unit phone and greeted the neurologist cheerfully. Then those dreaded words came, The test came back positive and Brett has Spinal Muscular Atrophy. I remember saying WHAT? And my knees buckling and I crumpled to the floor. I listened to what else she said and walked in hysterical tears to a private phone area. I called his dad with the devastating news and could barely get the words out. I remember the door opening and my friend Chrishonda handing me Kleenex and walking away, which meant more than anything at that moment. Then I went up to my supervisor and between sobs I only got these words out- Brett doctor called test positive go home. I remember co-workers trying to stop me on the way out to see what was wrong and all I could do was shake my head no. I remember crying all the way home- come to think of it I probably shouldn’t have been driving. Then I walked inside my house and saw my beautiful baby boy looking at me smiling, and I just grabbed him and hugged him and said it will be okay Brett. Then I played with him and tried to forget all the bad stuff.

Once the initial shock wore off, I started to research SMA and met families in the area whom have become some of my closest friends. Through their support and experience, I began to cope with the diagnosis. I was introduced to the NIV protocol and Amino Acid diet. We set up an appointment to go to New Jersey and meet Dr. John Bach (www.doctorbach.com ), whom in my mind pioneered the NIV protocol. Through Bach's recommendations and our local rehab office at Children's Mercy, we got a Bi-Pap, Cough Assist, Suction Machine, and Pulse Ox for Brett. It was a long, hard battle for Brett to get used to using the machines daily, and it took a major illness at 25 months old for him to realize how much he needed them. Brett was hospitalized for 14 days with RSV and pneumonia, it was the longest 14 days of my life, we almost lost him.

Please Be Patient While Brett's Favorite Songs Load!