Category Archives: Stories in the News
At 6 years old, Elijah Brummond does everything a normal kindergartener would, from running and jumping to practicing tae kwon do. He does all of this using a prosthetic leg. Elijah’s foot and part of his leg did not fully develop while in-utero, the result of a condition called fibular hemimelia. When Elijah was a baby, his parents decided to have doctors at Gillette Children’s Specialty Healthcare amputate the affected foot. Then, when he was just 1 year old, Elijah got his first prosthetic, giving him lifelong independence and mobility.
As a school-aged child, Elijah’s classmates often express curiosity about his prosthesis. And, like any 6-year-old, Elijah also has questions himself. To help educate Elijah and his classmates, his mother worked with Gillette prosthetist Michelle Hall, CPO, FAAOP, to organize a one-of-a-kind field trip to experience how prostheses and orthoses (braces) are used and made. During the April 24 field trip, the students were able to do things such as trial a myoelectric prosthetic arm, make a plaster mold of their thumb and foot, walk in prosthetic legs, and take a tour of Gillette’s Assistive Technology Department, where the prostheses are made.
As April was Limb Loss Awareness Month, it provided a perfect opportunity to raise awareness about amputees and the importance of prosthetics. It also gave the children a glimpse into Elijah’s life as an amputee and how he uses his own prosthetic leg. Students had a great day—especially Elijah, who led the way for his classmates.
Gillette welcomed a special guest earlier this week – Minnesota Vikings punter Chris Kluwe! Kluwe visited Gillette to interview Dr. Mark Gormley as part of a documentary film to raise awareness and support for people living with spinal cord injuries. As part of the film, which is being created by a Gillette patient family, Kluwe spent the entire day in a wheelchair! Here’s a preview of the day’s activities. We’ll share more, including photos of our visitors joining with Dr. Gormley to sign Gillette’s CurePity Pledge, next week.
Today is Mother’s Day. A day when millions of moms wake up and feel grateful for their children, whether they are normally-developing or living with a disability. Yesterday, we shared one mother’s essay, Welcome to Holland, describing the experience of parenting a special needs child. Today, we’re sharing the perspective of a mom whose journey to Holland happened in one terrifying and life-altering instant.
“When my son was born I counted fingers and toes, and was happy to get the all clear from his doctor,” recalls Robbi, mom to 10-year-old Ian. Then, one summer day in 2009, Robbi’s world turned upside down. While walking home from swimming lessons with his older brother, Ian was struck by a car. “My sweet, gentle boy was lying in a hospital bed with a traumatic brain injury, says Robbi. “We were told that he would remain in a vegetative state for the rest of his life. I felt like Alice, falling down the rabbit hole.”
When Ian came to Gillette for rehabilitation, Robbi describes her state of hopelessness beginning to shift. “In my complete darkness, Ian’s nurse, Tiffany, walks in with a huge smile, sits next to me as if we were old friends and begins telling me about Ian’s new schedule which included meals, baths, school and therapy. I truly felt as if someone had turned on a light and opened the door.”
Soon, Ian’s recovery defied expectations. “He quickly learned to swallow, and soon he could talk. He was coming back to me,” says Robbi. Today, she says it would be difficult for a stranger to tell he nearly died from a severe brain injury.
“Ian still struggles with some lingering deficits and needs continued therapy,” recognizes Robbi. “Gillette gave me my son back, and gave me the tools to deal with the new normal that our lives have become.”
The Muscular Dystrophy Association’s Labor Day Telethon has become an annual tradition, sharing stories of people throughout the U.S. living with a variety of neuromuscular conditions. Watch the telethon this year – it airs on Sunday, Sept. 4 from 6 p.m. to midnight – and you’ll see an inspiring story from right here in Minnesota. Jayson Tibbets, 17, of Plymouth, was diagnosed at age 3 with Becker Muscular Dystrophy, a genetic disorder characterized by progressive muscle weakness. He’s been a patient at Gillette Children’s Specialty Healthcare since childhood, where he receives a variety of services through the hospital’s Neuromuscular Clinic.
Because Gillette’s Neuromuscular Clinic partners with the Muscular Dystrophy Association, Jayson and his family receive support from both organizations. “All parents have questions about their child, but I have even more,” says Jayson’s mother, Lynn Tibbets. That, she says, is where the partnership is especially helpful. “Gillette and the MDA come in with a plan in place to overcome our obstacles. And if there isn’t an answer, they’ll figure one out.”
With Jayson now nearing college age, the family has come to appreciate Gillette’s transition services, as well. Because most disabilities—including muscular dystrophy—can’t be cured, Gillette offers transition assistance to people who, like Jayson, are approaching adulthood. Jayson, for example, recently began receiving services at Gillette Lifetime Specialty Healthcare, our clinic for adults. Not only can Jayson receive age-appropriate care needed to maintain his independence, but he can also practice important life skills he’ll someday need. For example, the MDA Telethon’s video crew recently followed Jayson while practicing with handicap accessible kitchen appliances in the Lifetime Clinic’s adaptive kitchen.
“Jayson’s positive attitude and determination has helped him remain focused on what he can accomplish, not on his limitations,” says Jason Kelecic, director of Gillette’s Neuromuscular Clinic. “As Jayson makes plans for the years ahead, Gillette and the MDA will continue working together to help him achieve his goals.”
The Tibbets say their goal in sharing Jayson’s story is simple: finding a cure. “I tell the MDA that my job is to help beat this thing,” says Lynn. “I like to say that it’s my business to put them out of business.” Jayson agrees—and continues to inspire both Gillette and MDA staff with his positive approach to life. “Just because you have a disease doesn’t mean you have everything taken away from you,” says Jayson. “I have limits, but I can still do lots of things.”
Wondering what Gillette patient Nick Nelson has been up to lately? Last week, Nick and his mom, Greta, spoke at the Minnesota State Capitol in support of a proposed prosthetic limb bill.
Believe it or not, this wasn’t the first time Nick’s spoken up for causes close to his heart. Last summer, he and Greta traveled to Washington, D.C. to meet with Senator Amy Klobuchar and other Minnesota lawmakers.
Sunday’s Pioneer Press shared the story of Willow Stein, a little girl whose smile — and future — is bright, thanks to a Minnesota couple’s love and Gillette’s Center for Craniofacial Services. Click here to meet Willow and her family.
To read about Willow in our Connections newsletter, click here.
When Mark and Sandy Brull moved from California to the Twin Cities 3 years ago, they knew to expect autumn colors, snowy winters, and those telltale Midwestern accents. But the family discovered something else, as well — Gillette Children’s Specialty Healthcare and a neurologist who’s helping their little girl, 9-year-old Maya, overcome a mysterious seizure disorder.
Maya had her first seizure when she was just 3 ½ years old. She was diagnosed with intractable epilepsy — a condition that means, quite simply, that her seizures are difficult for doctors to control. She’s been under the care of Dr. Galen Breningstall, a Gillette neurologist, for more than 3 years. The medication he’s prescribed has helped reduce the severity and the duration of Maya’s seizures, leaving her more time to play, learn, and just be a kid.
While there’s still work to be done — Maya’s epilepsy is among the most complex cases Dr. Breningstall has seen — the Brulls know he’s committed to helping their daughter live life to the fullest. “He is just wonderful,” says Mark. “If he hasn’t heard from us in a week, he’ll send an email. He’ll email us back on Sundays. And if he has a new idea, a new medication to try, he’ll contact us right away.”
Click here to see KSTP-TV’s story on Maya.
Arianna Hall is a bubbly and energetic 6-year-old who’s at the top of her kindergarten class. But just last fall, Arianna’s personality was quite the opposite — sleepy, sluggish and withdrawn. “She needed an unusual amount of sleep. And even after a full night’s rest, she would always be tired during the day,” says her mom, Jessi. As Arianna’s excessive sleepiness continued and she began to fall behind in school, the family turned to Gillette for answers. Pediatric sleep specialist John Garcia, M.D., ordered an overnight sleep study for Arianna — with surprising results.
Click here to see how Gillette’s sleep health clinic helped this “suddenly sleepy” little girl.