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The Fight to 29

  • Our 2nd son was born on May 14, 1999 and seemed perfectly healthy for the first 6 months. When we started to see signs that worried us, we went to the doctor and expressed our concerns. After months of fighting with our doctor about our concerns, we were referred to KU Medical Center.

    Finally, the day came that we went to KU Medical Center for our check-up! We talked to the doctor in the child development unit for an hour and she checked all kinds of movements on Trevor. She said that she would be right back! When she left, I told my husband that I had a feeling that we were not going to get to take Trevor home with us and that they probably think that I do not take care of my son since he is losing weight! I was partly right, the doctor was admitting Trevor into the hospital to get all of the tests done and to finally find out what was wrong. They also told me that I could stay by his side every moment because they could tell that Trevor and I had a very close bond that was important for both of us to keep!

    We were admitted into the hospital on March 21, 2000 and had EEG, MRI, eye exam, hearing exam, spinal tap and all kinds of blood drawn. They called the Ronald McDonald House and got us a room for my husband or I to stay at. We had no idea how long we would be in the hospital or what we would find out. I told my husband that my heart was telling me that they were going to tell us that our child was dying.

    Three days later on March 24th, a group of doctors (including my new doctor that actually listened to us) walked into the room with my husband, his mother, Trevor and I and closed the door. They asked us to sit down and then started explaining everything they had found. I was having trouble following all their terms, so I stopped them and said, “Are you telling me that my son is dying?” Everyone went silent for a moment before the neurologist said that he was going to die. My next question was “how long does he have?” They told me it would be a year at the most. My heart had been right and was trying to prepare us for what they were telling us.

    The doctors gave us a definite diagnosis of Krabbe Disease. They did not know much about it and there was not a cure. So, this is the first step to lead me to newborn screening push in Kansas.

    I started looking into the Newborn Screening that was offered in Kansas and found that it was very low and way behind other states. I started making phone calls and went to see my Representative to see what we could do. I also attended a few meetings to figure out the correct route to take to increase screenings.

    When our son passed away on February 17, 2001, I made it my mission to increase Kansas' screenings. We found out a month later that we were pregnant with our 3rd child which made it an emergency to get expanded newborn screening in Kansas. At this same time, Kansas was looking at their screenings and were working on the funding to increase. I was appointed to Kansas Newborn Screening Committee as a parent advocate.

    It did not happen before our daughter was born, but I was not about to give up. Kansas did finally increase to 29 diseases. I am still on the board and am still pushing to increase screenings. I plan to have Krabbe and other Leukodystrophies added within the next five years. It is amazing what your kids give the energy to fight for!

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