Mother: Hope never says 'I can't'

“It makes me tired,” Hope said as she sat to rest before trying again.

The surgery corrected Hope’s scoliosis and improved her kyphosis, which is over-curvature her upper back.

Similar procedures to the one performed on Hope are performed around the country annually, but her case is more fragile.

The smiley preteen is one of the roughly 15,000 Americans 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.

Since being born with the condition, Hope has racked up so many limb, hip, back and neck fractures that her parents, Tony and Stacey Moss, can only say she’s had “hundreds” of breaks when asked how many.

A broken leg was added to the list during the September surgery.

“The surgeon thought everything was good and actually, (the surgical staff) left for the night following Hope’s procedure,” Tony said of the 8-hour surgery.

But when the anesthesia wore off, Hope started complaining of leg discomfort. The family is no stranger to broken bones and knew the cause of the pain instantly.

“The break was very close to the knee, and it was very painful for her,” Tony said. “More painful than other breaks.”

The broken leg was only the beginning of a series of problems post surgery. Because she was having breathing problems, Hope stayed on oxygen for a majority of her hospital stay before Stacey said she and Tony pushed for the discharge of their daughter.

“We just wanted to be home,” Stacey said.

The family returned to their International Falls home and Hope seemed to be on the road to a full recovery.

Round two

About a month after the surgery, Stacey said she wanted to examine Hope’s back and the steri-strips, or butterfly stitches, that were holding the incision together. Disgruntled by her mother’s request, Hope insisted one of her older brothers be the one to look.

“I remember him yelling, ‘Mom, Hope’s back looks really good except for the two holes in it,’” Stacey said.

Thinking it was a mistake, Stacey casually peeked at Hope’s back to find the wound oozing with an infection “inside and out.”

“I instantly called Tony,” Stacey said. “I knew it was bad.”

The couple took Hope to the Rainy Lake Medical Center hospital campus where photographs of the lesion were taken and sent to Duluth to be examined. Within a few hours, the family received a call to be at St. Mary’s Children’s Hospital in Duluth the next day.

“We didn’t know then just how long the trip was going to be,” Stacey said. “But we knew whatever happened, Hope would be brave. She never says ‘I can’t.’”

Once in Duluth, the family learned Hope’s primary orthopedic surgeon, Dr. Laura Trombino, would be unable to do any corrective surgery, and because of that, Hope insisted she be sent back to Chicago.

She got her wish. The family hit the road bound for the Windy City the next day.

Delicate patient

The morning of Hope’s second extensive back surgery, Hope was reminded of her fragility.

While in the hotel room preparing to leave for the hospital, Hope was in the process of putting the cap on a stick of deodorant when her arm snapped.

“It just popped,” said Hope’s grandmother, Donna Vellieux, who traveled with the family.

It was nothing out of the ordinary for the Moss family, and they quickly fashioned a makeshift splint before heading to the hospital.

“So here is Hope with a broken leg and a broken arm getting ready for her second surgery,” Tony said.

Because of Hope’s broken bones, Tony was in the operating room with his daughter, holding her body as it went lifeless from anesthesia.

“It was intense,” he recalled. “No other way to describe it.”

The developing staph infection in Hope’s back was deep, Tony said. Instead of surgeons patching the areas that were exposed, they “completely opened her up” to ensure the entire infection was gone.

“It hurt,” Hope whispered of when she became conscious following the procedure. “The first surgery didn’t, but this one did.”

Doctors were unsure of the severity of the infection and the family was quarantined for five days in the hospital room.

“Donna and Tony could come and go as long as they washed their hands and were wearing gowns,” Stacey said. “Hope and I pretty much stayed put.”

Attempt at recovery

Exhausted and emotionally drained, the family returned home a little more than one week after arriving in Chicago. Stacey said they missed her twin sons, Trevor and T.J.’s 15th birthday. She told The Journal in September that she hoped the family would celebrate the birthdays together.

To top everything off, Trevor had complained of not feeling well.

Tony brought him to Rainy Lake Medical Center thinking he had appendicitis.

“The doctor just sent us home with antibiotics and said he had Chrone’s disease,” Tony said.

Two days later, Trevor’s fever spiked, and he was taken by ambulance to Duluth where emergency surgery was performed to correct a twisted omentum, a large fold of tissue that hangs down from the stomach.

“It was a long couple of days,” Stacey said, adding she was being pulled in two directions. “Hope wanted me to stay, and Trevor wanted me to go with. In the end, Hope was very brave and let me go. I’m glad that is behind us now. It was all in God’s hands.”

Standing tall

While her energy hasn’t been up to par, Hope is slowly gaining strength in the weeks following both surgeries, but hasn’t yet returned to school to be with her classmates.

“I want to make sure she is strong enough,” Stacey said, admitting she, too, wasn’t ready to release Hope back to school just yet.

In September, Hope told The Journal she was anxious for the surgery because doctors told her she could grow three inches. Monday she reported her wish came true.

“I’m taller,” Hope said with pride.

Since Feb. 19, Hope has been working on standing with Jennifer Windels, physical therapist at the Rainy Lake Medical Center Therapy and Wellness Center.

It has been months since the bottom of her feet have been on the floor.

“(Standing) helps her get stronger,” Windels said. “It’ll help her get used to taking weight in the legs again...It also lengthens everything again. In theory, the longer she stands, it will make her bones stronger.”

She explained bones become more dense through pressure and any standing, and eventually walking, will help increase the strength of Hope’s bones and muscles.

“All of that helps her be more independent longer,” Windels said.

After the entire experience and whatever else is to come, Hope said she wants to be a nurse someday to “help people like me.”

“I just want to be like all the nurses that I’ve had,” she said with a smile.

In fact, Hope is all set. She has a tote full of syringes, bandages and suction devices, all ready to practice on whoever is willing to let her.