|| The Madison Claire Foundation ||

Madison was born on May 16, 2002, three weeks early but overall very healthy. She was always a very content happy baby from the beginning, it was rare to hear her cry. As the next few months went on, we noticed she was not progressing as our other two children did - she was not lifting her head, rolling, bearing weight on legs or sitting unaided. In November of 2002, these concerns were addressed at her 6-month well check and her pediatrician referred us to see a neurologist. December 1, 2002 we saw the neurologist; upon examining Madison she was positive that Madison had SMA. She ordered a blood test that would take 2 weeks to get the result to confirm her diagnosis. The doctor told us very little at that point about SMA, but I remember vividly my husband asking if it was positive what we could expect, she told us Madison would have a very short life expectancy. When we got home my husband spent hours reading up on SMA and crying. I however refused to listen or read, for more than anything to have two more weeks of believing nothing was wrong.

On December 20, 2002 we got the call to come in, they had the results. When the doctor came in the room with a social worker that immediately told us it was not good, Madison had SMA Type I - the most severe. We spent the next couple of hours discussing what lied ahead and discussed the difficult decisions we would have to make about how much we do to keep our little girl alive. We were told she would most likely die before the age of 1. We went home and cried for weeks trying to make sense of it all. At that point we did make the decision that everything that was done would be what was best for Madison, not what was best for mom or dad.

February 1, 2003 we brought Madison into the ER as she was struggling to breath and was turning blue, she had a cold for about 2 weeks. Upon arrival she was in respiratory failure, I have never seen a team of doctors work so fast. Once they had her stable we went up to the ICU. The x-rays showed that her lungs were collapsed and unless she was put on a ventilator she would not survive. We had previously made the decision that we would vent her the first time, so we said yes. Coming back into the room to see her on a ventilator and full of IV tubes on her little body was such heartbreak--life was now changed. Tests showed that Madison had pneumonia and para-influenza. She was vented for 19 days, hospitalized for 21 days. I moved into a parent room down the hall and stayed with Madison. After coming home Madison had a good 6 weeks.

April 10, 2002 I brought Madison back to the ER for dehydration. Upon x-rays being taken one lung was collapsed and up to the ICU we went. They put her on oxygen and wanted to see how she would do before making any decisions. I went down the hall to sleep and got called at 2 am, Madison was really struggling to breathe. They wanted to put her on a bi-pap machine to help her breathe, trying to avoid ventilation, I gave the go ahead. Throughout the day there was no improvement and they wanted to ventilate her again, something we really did not want to do. However, the pulmonary doctor felt that all she needed was 3 days on the vent to clear up her lungs and we could get her off. So we agreed to put her on. Madison spent 27 days on the vent this time. Because she was having such difficulty come off we had a care conference with all her doctors, nurses, and social workers. We had to make the decision of what to do if she failed when removed from the vent - put her back on or let her go. Madison did come off and was immediately put back on the bi-pap for 3 days to transition her back to just oxygen. 32 days in the ICU and we could go home, but with changes. Home nursing had to be in place, along with a hospital room of equipment (oxygen, suction machine, oximeter machine, feeding tube, bi-pap machine). We got home on May 12th, just in time for her first birthday.

May 30, 2003 we brought Madison back to the ER as she was struggling again. X-rays showed that her lungs were collapsed. Back in the ICU doctors felt that if ventilated again Madison would not come off, her lungs were damaged and had not had enough time to heal from the last hospital stay. Family was called down to say goodbye as the doctors felt that she would not make it thru the night, and for sure no longer than 3 days. In the morning on May 31 we decided to take Madison home to die. To everyone's surprise, mostly the doctors, Madison actually got better at home without life support measures. Over the course of the next year we really listened to Madison, the less we medically did the better she actually did and the happier she was. She did have many bouts with pneumonia along way, going days without opening her eyes, but she fought each illness off on her own in less time than being treated in the hospital.

May 16, 2004 Madison is two today. She has defied all odds. We can see that Madison's body is starting to wear out though, her spine is greatly curved and it is becoming more difficult to move her legs, arms and head. She has figured out though that if she bites her finger she can pull her head to the other side. Her personality continues to shine, always smiling.

August 16, 2004 Madison has been sick for a week now and all she will say today is "all done". Little did we know at the time that she was telling us goodbye. Ironically that evening when my four-year-old daughter went to kiss her goodnight, she came out crying saying "I don't want Madison to die". She had kissed Madison goodnight many times before and had never said this.

August 17, 2004 Madison passed away this morning at 6 am in my arms, surrounded by daddy, grandma and grandpa, her sister, nurse Laurie, and pastor Dave - surrounded by love.

We miss Madison everyday, but there is some peace in knowing she is no longer in pain and can run free up in heaven. She has left a mark on so many hearts.