Noah

May 5th, 2002 - July 31st, 2002

We LOVE YOU Babygirl!!

Amy, Bobby & Madison

1 day

2 weeks

We would like to introduce you to our little angel.

Madison Paige Brown was born on May 5^th at 1:07 a.m.

She weighed 7lbs 2oz and was 20.5 inches long.

6 weeks

As soon as she was born she began having seizures and the doctors and nurses had a difficult time getting her to breathe on her own. By 5 a.m. she was taken to children's hospital in St. Louis. Where after a battery of tests she was diagnosed with a disorder called Zellweger's Syndrome. We had never heard of such a thing and as we discovered we wish we hadn't.

It is a degenerative disorder affecting her brain, liver and kidneys. She was born with a condition called Pachygyria(smooth brain), cystes in her kidneys, poor eyesight, she cannot hear except high pitched noises, she cannot suckle or swallow so she is fed through a stomach tube, one of her fingers is not formed right, her feet were clubbed and she has very poor muscle tone.

4 weeks

With her disorder she cannot process long chain fatty acids so they build up as toxins in her little body. The prognosis is not good for most babies born with this usually don’t live to be a year old.

We have her at home so we can spend as much time with her as she has left. Maddy is a fighter and everyday she warms our hearts with her smiles and the funny little faces she makes. She doesn’t cry much so when she does it is like the most beautiful music ever played.

We are hoping and praying for a miracle for her. But if we don’t get one we will cherish every memory we have of our little angel that was sent to us. It is very hard to explain the feelings that come along you go from exhilaration to dispair and back again. When something like this happens it is human nature for parents to blame themselves, you think of every bad thing you have ever done and wonder if that is why. But as we had to learn these things are no ones fault. The best you can do is love them and enjoy every second you have them with you.

Zellweger's Syndrome is a genetic disorder. Both parents have to carry a recessive gene for it. They tell us that the chances are 1 in a 100,000 for this to happen. And that if Amy and I plan on having more children that there is a 1 in 4 chance of it happening again. But they can test the fetus before 10 weeks to see if it has the disorder.

Thank you for visiting our daughter's page. I am putting links at the bottom for some sites on the disorder.

Thank You for all your thoughts and prayers. Maddy appreciated them ALL!

Madison passed away at St. Louis Childrens Hopsital on Wednesday July 31st from pneumonia (respiratory failure). She had been struggling with her breathing and finally went to sleep in our arms. She will be missed more than anyone will know.