Winnipeg Free Press (Newspaper) - January 24, 2015, Winnipeg, Manitoba
C M Y K PAGE A21
winnipegfreepress. com CANADA WINNIPEG FREE PRESS, SATURDAY, JANUARY 24, 2015 A 21
2015
SONATA SPORT
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2015
SANTA FE LUXURY AWD
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2015
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2014
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SUBMITTED PHOTO
Three- year- old twins Binh ( left) and Phuoc Wagner have Alagille syndrome, which affects the function of their livers.
A N Ontario couple
faces an unspeakable
dilemma: Their
ailing twin girls both
need new livers to live, but the
father can only save one.
Michael Wagner found out this week
he's a match to give part of his liver to
one of his three- year- old daughters,
who both suffer from Alagille syndrome
- a genetic disorder that affects
the liver, heart and other organs.
A team of doctors at Toronto General
Hospital will decide which of the girls,
named Binh and Phuoc, will receive the
transplant, said Johanne Wagner, Michael's
wife and the girls' mother.
" We told them we didn't want to be burdened
with the decision- making," she
said from Kingston, Ont., the family's
hometown.
Johanne Wagner said doctors are expected
to perform the surgery in about
two weeks. In the meantime, the family
is going public with their story in the
hopes of finding a donor for the other
daughter.
The main problem the girls are facing
is the function of their livers, which are
slowly dying, Wagner said. They have
fewer bile ducts than normal, which
means less bile gets into the liver, and
that causes problems with fat digestion
and vitamin absorption.
The twin girls were 18 months old
when the Wagners adopted them from
Vietnam. They are the youngest of the
couple's nine children - they had five
of their own before deciding to adopt.
They knew early on the girls had liver
problems but didn't know the extent,
said Johanne Wagner.
" When we saw them at the orphanage
we were shocked, really," she said.
" They were nine pounds at 18 months.
So we left the orphanage that day and
went to buy two little containers with
dragonflies on them, and that's what we
were going to lay their ashes in if they
didn't make it."
Their mother said the twins continue
to play and enjoy life as curious little
girls, even if they are developmentally
delayed because of their poor health.
But she said they are becoming
aware they aren't like other kids their
age. They know other girls don't have
feeding tubes sticking out of their bellies.
Itchiness is another problem the girls
have from the disease, Wagner said.
" There's blood in the bed in the morning
from scratching. There's no way
they can concentrate. It rules their
life."
A new liver doesn't guarantee a long,
healthy life, Johanne Wagner said, but
the girls' livers will fail them at some
point, and if the family doesn't find a
donor for their other daughter, she will
die.
Despite this, the family remains positive.
" We look back and we have no regrets,"
Johanne Wagner said.
" We would travel this path all over
again. They have taught us openness,
they have taught our children sharing
and openness. It's been nothing but a
wonderful mess."
- The Canadian Press
Father's liver
can only save
one sick twin
Ontario family seeks donor
for other ailing daughter
By Liam Casey
A_ 21_ Jan- 24- 15_ FP_ 01. indd A21 1/ 23/ 15 8: 30: 39 PM
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