Aug. 10, 2016 | Life for the Boxx family changed dramatically on Dec. 26, 2013.
Janet Boxx, her husband, David, their three children and an international student were traveling from Kansas City and were almost to their Bentonville home when they were involved in a three-vehicle accident just outside the Arkansas border.
“The truck pulled in front of another vehicle, was rear ended, and was pushed into our lane of traffic,” Janet said. “The accident killed our oldest and our youngest daughters and badly injured Gracen.”
Bethany, 20, and Katelyn, 16, died at the scene. Gracen, 18 at the time, had a damaged spleen; a collapsed lung; a fractured left pelvic wing, right thigh just above the knee, and right wrist; and multiple lacerations. She was airlifted to a hospital in Joplin, Missouri.
Gracen Boxx with orthopaedic surgeon Regis Renard, M.D., three years after she was severely injured in a car accident in 2013.
After Janet and David were treated and released for their injuries at a Rogers hospital, they went to be with their daughter Gracen. She’d had emergency surgery and spent a couple of days in the intensive care unit. The orthopaedic surgeon recommended Gracen be transferred because the break in her leg was very complicated.
“He said, ‘I’m a good surgeon. This is a complicated injury and I think she’d be better served with a doctor who has more experience than I do.’ So, they started looking for a place where we could find a surgeon that had more experience. They told us UAMS would be the best place for us.”
Their medical team put a temporary external fixator on her leg to immobilize it until surgery. On Dec. 31, Gracen rode an ambulance to UAMS where they saw Regis Renard, M.D., assistant professor of orthopaedic surgery in the UAMS College of Medicine.
“She had very bad injuries,” Renard said. “She broke her right thigh bone just above her knee in about four places. It was a very unusual pattern which is termed a bicondylar Hoffa fracture.”
“We were in shock, reeling. But our care was phenomenal,” Janet said. “Every nurse, the people who brought meals, the people who cleaned the floors. They would ask us, ‘Is there anything I can do for you?’ That was huge to me. We felt like they not only took care of our daughter, the patient, but that they were taking care of us, too. That really made an impact on me.”
The family had to leave their daughter in Little Rock to go back to Bentonville to bury their other two children.
“It was difficult to leave her. But after we talked to Dr. Renard following her knee surgery, I felt for the first time that Gracen would pull through.”
“Our minds were consumed with Gracen’s recovery,” David said. “I don’t think our grieving really set in until after Gracen was home. Then she was bedridden for three months.”
Two years before the accident, Gracen had been diagnosed with a rare neuruodegernative disease called autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS). Janet had been having concerns about Gracen and Katelyn’s development since the children were toddlers.
“As they grew, the physical issues became more pronounced, affecting both their fine and gross motor functions, which impacted daily life and learning,” Janet said.
They received a diagnosis 15 years later. Gracen sees Tonya Balmakund, M.D., professor of pediatrics and neurology in the UAMS College of Medicine who works at Arkansas Children’s Hospital.
Balmakund said ARSACS is quite rare in the United States and probably underdiagnosed. It is much more common in Canada where the incidence is about 1 in 2,000. Recent genetic testing has made diagnosing this condition easier and hopefully will raise awareness.
“Gracen’s condition was compounded significantly by the accident,” Balmakund said. “But she’s a fighter. She’s a delightful, driven young woman who doesn’t know the word quit. Her great attitude and persistence helps her tremendously.”
Balmakund hopes there will be more services made available for those diagnosed with ARSACS in the United States. It is not covered under muscular dystrophy, so separate funding sources for therapy and assistive devices are needed. This is not the case in the Quebec area of Canada where this is much more common and services abound.
For Janet, the last two years have been challenging. “Not just for losing my children, but also because Gracen’s underlying disease is progressive. She will lose physical skills over time. We live in anticipation of those changes. A lot of handling of our loss is confronting my faith in light of the circumstances we find ourselves in.”
Renard says the fact that the family has such positive attitudes is helping the situation both physically and otherwise.
“They’re all in it together,” Renard said. “Her parents are very involved with her care and her well-being. I think that is the most important aspect for Gracen and her parents. They all support each other.”
Today Gracen is starting her sophomore year of college at John Brown University in Siloam Springs. Her mother says Gracen has been thriving on the increased independence. She receives physical and occupational therapy and speech therapy in northwest Arkansas. She also sees a grief counselor to help her cope with the loss of her sisters. She hopes one day to become a counselor herself.
“I want to help people like me who are either disabled or have had death in their family or people who may be dealing with body image issues,” Gracen said. “I think it will come naturally for me to help someone else because of what I’ve been through. They’ll know I can relate to them. I think that’s important to people.”
David and Janet both say they’re very grateful for the encouragement and care they’ve received from all directions. While they have focused heavily on their daughter’s health and healing, they’re also still grieving the loss of their other children.
“From the good Samaritans that pulled over to help, the emergency responders at the scene of the accident, medical staff at the hospitals, our church and community to the people who took care of our dog. It’s been an amazing blessing to us as a family,” David said. “While we’re struggling with the circumstances and the frustrations, we’ve also experienced the amount of good in the world in spite of the bad.”
The couple credits a program called While We’re Waiting for giving them and other bereaved parents an opportunity to cope with their grief.