Sign up for the paNOW newsletter

Teen with muscular dystrophy finally finds her voice

Sep 12, 2015 | 8:33 AM

Mark and Charina Warner didn’t hear their daughter say a word until she was a teenager. 

“After 13 years, we finally heard her tell us, ‘I love you’,” said Charina. “Being a parent, it’s an amazing feeling.”

With the help of the Proloquo2Go app, she could finally find the words.

“Even though it’s through a machine, to hear how she feels about you or what’s on her mind…it’s just amazing for us,” Charina continued.

Sixteen-year-old Guinevere Warner, known as Gwen, was chosen as the ambassador for the Prince Albert Safeway Walk for Muscular Dystrophy at Kinsmen Park on Sunday.

She was born with congenital myotonic muscular dystrophy; a strain of the disease that Gwen’s father said affects one in 8,000 people in Canada.

Mark and his first wife found out they were going to have a baby in 1998. When Gwen was born in 1999, they were told her birth mother had a milder form of the same condition she was born with: muscular dystrophy, the same disease she died from shortly after.

Gwen was born in Prince Albert two months early at three pounds, three ounces.

Immediately, she was transported to the Royal University Hospital in Saskatoon, because she couldn’t breathe, and was immediately rushed into surgery. Mark said the doctor wasn’t optimistic.

“He said, ‘Well, we can do surgery, but she probably won’t survive the surgery, and if she does survive the surgery, she probably won’t survive recovery,” said Mark. “I said, ‘People win the lottery, give her every chance she’s got.’”

The surgery helped but doctors still told Warner they didn’t think Gwen would ever make it home from the hospital which is where she stayed for the first eight months of her life.

Now, Gwen is 16 years old.

“Which is pretty good for the most severely affected child (the doctors) had ever seen,” said Mark. “Cognitively, she’s probably about five or six years old.”

Gwen also had a prolapsed cord, causing oxygen deprivation at birth, which may be a factor affecting her mental function. To this day, she is nonverbal.

She lives with her father, her step mother and her siblings Cariza, Bernard, and Miguel, in Prince Albert.

Their home is a little different than most.

When you walk in, you must sanitize your hands with the dispenser mounted on the wall at the entrance.

Gwen has suffered from multiple bouts of pneumonia in her life because she doesn’t have the strength to cough.

“You want to cough for her because she just can’t,” said Mark.

Warner said they rarely get sick because they’re hyper aware of everything. They have an air purifier and they only clean without Gwen around so dust doesn’t get in her lungs.

The windows remain closed at all times.

When forest fire season was ablaze, Gwen became ill for the first time in a long time.

Every ten minutes, her saliva has to be suctioned, because she doesn’t have the ability to swallow as other people do. If she’s sick, the time between suctioning is cut down to every two minutes.

Gwen is also on oxygen 24-7, making it difficult for her to leave the house. Although, her family says she enjoys the occasional shopping trip, going bowling or to the movie theatre.

The living room lacks lighting besides a few lamps put around the room. This is because they had a ceiling track lift installed through the middle of the living room, with the help of Muscular Dystrophy Canada, which they use to transport their daughter around the house.

Her fulltime caregiver, Natalia, stays by her side.

Gwen attended special education classes at Vickers, but after three days she ended up sick and was in the hospital for two weeks. Now, Charina homeschools Gwen – her primary task is learning to communicate with the app.

“It’s such a blessing for us to see each day and appreciate every little thing that many people are neglecting. Because of her, we appreciate life better,” said Charina.

 “She’s a blessing. All the things that have happened to her, she just keeps smiling and she’s happy,” said Mark. “She’s helped us to learn what really matters.” 

Mark said having Gwen changed his life instantly.

“I went from being a self-absorbed twenty-something to a husband and a father to a little girl who needed us desperately,” he explained. “She needed an advocate.”

Mark said dealing with the medical system hasn’t always been easy, but he pushes to get the best care possible for his daughter.

“The important thing to remember is even though we’re talking about people with disabilities, what we’re talking about, ultimately, is people,” he said.

“Appreciate life,” said Charina. “Every moment counts. It doesn’t matter if your kid is disabled…they’re alive, they’re a gift, treasure them.”

“It’s not a bad thing,” said Mark.

“No,” continued Charina. “It’s just a different one.”

“It’s not what you expect but it’s still a gift. It’s still a life that needs to be treasured.”

Those interested in registering for the walk can do so at Kinsmen Park at 12:30 p.m., Sunday Sep. 13. The walk will follow at 1 p.m.

Funds raised will help provide equipment, emotional support, advocacy and education to families affected by the disease. It also goes to research with the hopes of treating it, and one day finding a cure.

asoloducha@panow.com

On Twitter: @alex_soloducha