Watching Binh and Phuoc Wagner bound around the main floor of their Kingston, Ontario home, it’s hard to imagine that just three years ago they were suffering from a life-threatening illness.
The Vietnamese twin sisters live with Alagille Syndrome, a condition that affects their ability to absorb nutrients and stunts their growth. Doctors decided they would need liver transplants to survive.
Michael and Johanne Wagner of Kingston knew that when they adopted the girls and were willing to fight for them.
After a social media campaign that drew widespread attention and touched hearts, the girls received life-saving liver transplants at Toronto’s Hospital For Sick Children. Phuoc received a piece of her adopted father Michael’s liver, while Binh received part of an anonymous donor’s liver. The family says they still have never met that person.
Meeting the twins Monday, their favourite Disney figurines all but glued to their palms as they smiled and mugged for a Global News camera, the improvements are obvious.
Their parents say all symptoms of liver disease are gone, but there are still some smaller issues to contend with.
“They’re constantly getting little illnesses. Colds, earaches, because they’re immune-suppressed,” says Michael Wagner.
“They seem to just keep catching the same cold, where a normal, healthy person would shed it in the normal period of time and then go on.”
The family takes no risks — even posting a sign on their front door warning visitors not to come in if they have cold or flu symptoms.
Binh and Phuoc still make quarterly visits to SickKids for tests and checkups and it’s expected they’ll need medication and treatment for the rest of their lives; but the Wagners say this part’s a cakewalk compared to previous years.
Whereas they used to have to feed the girls through tubes connected to their digestive system, Johanne Wagner says now “all of their feeds are by mouth, they’re not fed through the night, they’re absorbing whatever nutrients we give them.”
They say the odd word, and can certainly show their emotions, but the twins are still learning how to talk.
Potty training also takes up a lot of their time these days, as does school. The first day of class back in September was a landmark for the proud parents as they watch their daughters continue to develop.
“They have an educational assistant with them at all times to make sure that they’re okay,” explains their adopted mother.
“Let’s face it, they’re behind their peers, but they love having new friends and they’re slowly catching up. They’re going to be five years old in May and they’re functioning currently at about two years, nine months.”
Binh and Phuoc are two of four special needs kids the Wagners have adopted from Vietnam and the family makes sure to keep their strong connection to the foursome’s birthplace today. Johanne Wagner just got a new job with TDH Ontario, helping families adopt children with special needs from Vietnamese facilities.
The Wagner family has also launched a new GoFundMe campaign attempting to raise $19,000 to buy 85 specially-sized mattresses for Vung Tau Centre, the orphanage from which they adopted five-year-old Toan and seven-year-old Logan Hoang.
Johanne Wagner says the centre’s old location had fallen into disrepair and was deemed unsafe, so the local government recently set them up in a new building.
“The mattresses were in a state of disrepair, so they could not move the mattresses to the new centre… They have the bed frames, but the frames are not… standard size,” she explains.
As a result, and as a picture on the crowdfunding page shows, she says the children there are temporarily sleeping on the floor.
The campaign was launched in January and is still far short of its goal, having received $1,080 as of late Wednesday afternoon.
If they manage to top their goal of $19,000 Johanne says “any additional money collected will be used either towards a synthetic soccer field… or a playground for the disabled children.”
Back at home, the Wagners are thankful every day for the health of all nine of their kids, adopted and biological.
Though one year later, you can forgive them if they still don’t know what to say to the anonymous donor who, like Michael Wagner, saved one of their little girls’ lives.
“I know that person is out there and I know that person knows how I feel,” Johanne Wagner says with a smile.
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