Alexander, and his twin brother Benjamin, were born
in late 2003. We were told the day after they were born that Alexander
had biliary atresia and probably wouldn't survive. Quite a shock after
being told the day before that all was well and both boys looked
"perfect".
Fast forward thru 17 days in the NICU and 2 and half
months going from doctor to doctor, we finally got a diagnosis of
alpha-1 antitrypsin definciency. Alexander's liver values (AST and ALT)
have never been in the "normal" range, but still haven't gotten near
1,000 so the doctors aren't too worried yet. We continue to do blood
work every 3 months or so to follow the trends and learn more.
Alexander struggles with horrible reflux, lots of
vomiting, and with putting on weight. He has never been on the growth
charts. Luckily, looking at our boys you would never know there was
anything wrong. Alexander is a very active little guy and enjoys
getting in all kinds of mischief with his brother.
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