It was a hug from her 14-year old brother that caused Hope Moss to break down in tears Tuesday while telling family and friends goodbye at Einarson’s Flying Service.
Along with words of encouragement and several “see you soon” exchanges, Hope and her parents, Tony and Stacey, boarded a private jet bound for the Children’s Shriners Hospital in Chicago.
“We’ll be back next week,” Stacey told her son, Trevor, as he wiped tears from his eyes.
Hope, a happy-go-lucky 12-year-old from the Falls, traveled to Chicago this week to undergo a major back surgery intended to help correct scoliosis, which means Hope’s spine is curved from side to side, and improve her kyphosis, which is over-curvature of her thoracic vertebrae, or upper back.
While there are hundreds of procedures similar to Hope’s performed around the country annually, her case is more fragile.
Literally.
Hope is one of the roughly 15,000 Americans known as "children of glass," a nickname given to children who suffer from osteogenesis imperfecta (OI), an incurable, but not fatal genetic disorder, involving bones so brittle that they can snap at the slightest touch.
In her 12 years of life, Hope has racked up so many limb, hip, back and neck fractures that her parents can only say she’s had “hundreds” of breaks when asked how many.
Hope said she remembers a few years ago when her pediatrician did something as simple as check her ears, which resulted in weeks of pain and recovery.
“He turned my neck and broke my neck,” Hope said, adding she is still leery about having her ears examined.
“Our goal is to focus on prevention so Hope doesn’t have any breaks doing daily activities,” says Tony, an electrician at Boise’s paper mill.
To keep Hope comfortable and safe for Thursday’s surgery, she and her parents traveled on a Learjet 45 sponsored by the Minnesota chapter of Wings of Mercy. Wings of Mercy is an organization that provides free air transportation for people with limited financial means who need treatment at distant medical facilities. The effort is an all-volunteer medical air transportation service with FAA certified pilots, nurses and other professionals who donate their time, planes and expertise to transport people who are in medical and financial need.
“It is wonderful because we couldn’t afford to fly on our own,” Stacey said.
John Wojack, one of the pilots on Tuesday’s flight, told The Journal that Anderson Trucking Service of St. Cloud donates its time and plane to Wings of Mercy.
“It is the right and proper thing to do,” said the pilot who has 26 years of experience under his belt.
Wojack added that spending time with a patient like Hope compels him to step back with a greater appreciation of life.
Preparing for surgery
Thursday’s surgery did anything but sneak up on the Moss family. For three years, Hope’s doctors in Duluth and Omaha, Neb., have been on the lookout for a doctor who would increase the quality of life for the youngster.
“Her bones add a whole new complexity to the surgery,” Tony said.
And, because of the nature of Hope’s disorder, Tony added that there were only two surgeons in the country that would consider working on his daughter to help correct her spine, which is curved at a 75-degree angle.
Stacey explained that because of the curvature, several of Hope’s internal organs are running out of space.
“Because she is becoming a teenager, Hope’s scoliosis has changed drastically,” Stacey said. “Doctors are worried about her lungs and how they would be impacted without the surgery.”
And becoming a teenager she is.
Like most girls Hope’s age, the bubbly, but shy, 12-year-old wears glitter eye shadow, has a streak of dark color in her blonde hair, and spends too much time on Facebook. Yet glancing at the preteen who is only 3-1/4-feet tall, suggests she’s not much older than 5.
“I could grow three inches (from the surgery),” Hope said with a hint of a smile.
But before scheduling the surgery, Hope laid down one very important stipulation. The procedure couldn’t take place until after her favorite event of the summer — the International Falls Bass Championship.
“I love the bass tournament,” she said with a smile.
And now that the tournament has come and gone, Hope says she is ready for the surgery to be over, but has trouble hiding the nervous anticipation in her eyes.
“We haven’t met the two surgeons who will actually be doing the surgery,” Tony said, distracting his daughter. “We’re confident they are skillful enough for a positive outcome.”
Recovery
At press time Thursday, The Journal received an update that “everything went good,” during the surgery from Hope’s grandmother, Donna Vellieux. The family said Monday, they predict a four-to-six-week recovery period.
The plan is for Hope to only spend one week in Chicago, with a day or two spent resting in intensive care.
“We’re going to take it one day at a time and hope for the best possible results,” Stacey said.
After returning home, Hope will have to be at 90 degrees at all times for the duration of her recovery stage.
“We haven’t figured out where we’ll put her,” Stacey admits. “Normally, she ends up on the couch after surgery, but we’ll just have to go with the flow and adapt.”
Hope’s brothers, twins Trevor and T.J., said they will be as much help as possible.
“I’m not sure how we’re going to lift her,” Trevor said. “We will do everything we can.”
Both Stacey and Tony admit their sons haven’t received the attention from their parents that they deserve.
“Unfortunately, with all the attention Hope needs, she tends to come first,” Stacey said.
But Stacey credits her boys for being so understanding and hopes that the family will be together for the boys’ 15th birthdays in October.
For now, the Moss family turns their courage over to faith, friends, family and neighbors.
“God gave us Hope for a reason,” Stacey said. “Whatever he has planned, we’ll deal with. There are a lot of people in this community praying for us — praying for Hope.”
