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Tuesday, March 3, 2009

My heart is broken

I'll start with the beginning of the story for those who are hearing about this for the first time.
7 months ago a baby boy was born at the same hospital that Sami and Garrett were and he was born with EB. The first time I saw a picture of him, I said 'he has simplex dowling meara!'. Everyone thought I was nuts because of how severe he was. But the biopsy came back as simplex dowling meara. I met the family when he was 2 weeks old and we have been friends every since. I saw them about once a month. They met Sami, which gave them great hope for the future. EB wise he was very similar to Sami and Garrett. I felt such a connection to them.

Like many babies with older siblings, he caught every cold his brothers brought home from school. And they always settled in his chest. Even with breathing treatments and steroids, it was difficult to reduce the mucus and inflammation in his lungs. He had frequently breathing difficulties that landed him in the ER. He never had any signs of upper airway issues and nothing that indicated that it was EB related. Two weeks ago tomorrow he stopped breathing for a third time. This time is heart stopped as well. It took 15 minutes to bring him back. He had been on a ventilator ever since. Yesterday he had an MRI done which shown significant brain damage from being without oxygen for so long.

After the MRI he was taken off the ventilator, breathed on this own for 11 hours, and died at 6:08 this morning.

I loved him as if he was mine and my heart aches like when Garrett died....

http://jtsetsma.blogspot.com

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