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Madison's Story

Madison

Madison was born at 37 weeks and 3 days due the fact she wasn’t breathing properly in utero. My husband and I found out at our 15 week ultrasound that something was going on. The doctor at the time had mentioned that it might be vascular malformation, but she wasn’t sure so we were sent to a specialist. When we went to see the specialist the testing began, an aminotisis was preformed to pull amniotic fluid out and genetic test for what was going on. All test came back negative, so again my husband and I were left in the dark about our unborn child.

Monday April 13th at 4:20 pm Madison made her grand entrance to this world. She was born via C-section, I was out through the whole thing do to more complications. I didn’t get to meet our awesome little one until hours later. I wasn’t allowed to hold her just look and touch her little hands. Pensacola Florida didn’t know how to handle her care so the hospital handed her off to Texas children’s hospital and our journey was off.

Madison was 3 months old when she was diagnosed with CLOVES syndrome. At that point in time I turned to medical books for answers as well as talking with her doctors to better understand how to better take care of her. I didn’t know who to turn to for support and didn’t know anyone in Texas with the same situation, needless to say I as a mom was scared. So I had a friend sit down with me and help make us a medical web page for Madison. This page as got tons of attention to the point that we have had our story published several times and even been on TV a couple of times.

We were told after Madison was born that she would not walk or sit up on her own or even scrawl. At that moment I promised my baby that she would do these things, that she would have a normal life despite what the doctor had said. Currently our baby will turn two soon and she is running and playing with her older sister like nothing ever happened. I kept my promise. We worked tirelessly to insure that Madison did everything that the doctors said she wouldn’t. It has paid off in a very BIG way.

Everyday is a new challenge for us since CLOVES is fairly new and so rare we are always on our toes. I want the best for our children and it doesn’t matter what it takes. It will be done. If you do want to check out madisons web page it called “The Mighty Madison” on face book. Included with the web page is the TV show we went on “The Doctors” and The Texas ABC news 13.

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