Ezra Proves He Can Play Soccer
With Rehabilitation, Ezra Proves He Can Play Soccer
Sarah St. Louis focuses her smartphone on her 5-year-old son, Ezra. It’s a cloudy April evening with a hint of rain and Ezra’s gearing up to play his first soccer game. St. Louis takes as many pictures as she can, relishing in the moments she thought might never happen when, four years ago, Ezra nearly died in a car crash that damaged two-thirds of his brain.
But Ezra didn’t die. He survived, defying doctors’ expectations. Still, when Ezra arrived at Gillette Children’s Specialty Healthcare for inpatient rehabilitation, his outlook was uncertain.
Ezra’s traumatic brain injury meant he’d need to relearn every skill he’d gained in his 20 months of life. He made slow but significant progress, relearning how to eat, crawl—and, to St. Louis’ joy, how to say “mom.”
Ezra continued his therapies at Gillette and, two years ago, began walking. One dream still eluded him—he wanted to play soccer like his big brother. Ezra achieved that dream when he joined Tonka United’s pre-K team. He falls more often than his teammates and wears a helmet to protect his vulnerable brain. But none of that matters because he’s having the time of his life.
“This is what Gillette can do,” says St. Louis. “They can take a child on his deathbed and help him play soccer.”
Hailey Can Be Adventurous
Hailey Hosler, 11, loves fishing, camping and doing most anything in the great outdoors. “I like spending time with my brothers, spending time with you and spending time with the dogs,” she tells her dad, Rodney Hosler.
Hailey and her family get ready for hunting in the usual way, donning blaze orange vests and sturdy boots before piling gear into their truck. There’s one piece of gear the Hoslers need that most families don’t: a special wheelchair that helps Hailey navigate the muddy, often uneven, terrain. Hailey has spina bifida, a condition that limits the movement of her legs.
Hailey received her first wheelchair from Gillette at 18 months old—and her independence skyrocketed. Surgeries corrected her clubfeet and stabilized her spinal curvature, called kyphosis. Today, she’s an adventurous kid who knows what she wants and goes for it.
The Hoslers make a point to include Hailey in their outdoor activities—they know she wouldn’t have it any other way. “Gillette showed us everything Hailey is capable of,” Hosler says.
Elijah Can Lead the Pack
Following Expert Care, Elijah Can Lead the Pack
“What I love about leading is you get to teach people lessons about life,” says Elijah Blasingame, 13. Elijah knows a thing or two about leadership. He’s a patrol leader for his Boy Scout troop and he’s poised to become an Eagle Scout.
Essential leadership qualities, according to Elijah, include good morals and patience. He learned the latter early in life when he underwent selective dorsal rhizotomy surgery to address muscle tightness caused by cerebral palsy.
“As you can imagine, 5-year-olds aren’t too patient,” he says of the experience. “But after surgery it was like, ‘Woah, I’m flexible!’ I could do a lot more stuff.”
After his most recent surgery at Gillette Children’s Specialty Healthcare, Elijah’s already seeing improvements. “I can straighten my legs out all the way. It’s a lot easier to walk because I’m not, as my mom would say, walking like a T-Rex,” he jokes.
The timing of Elijah’s procedure wasn’t a coincidence: He opted for January so he wouldn’t miss a much-anticipated Boy Scout camp this summer. Elijah’s mom, Janelle Blasingame, says her son’s care at Gillette transformed him from a watcher to a peer and leader. “Gillette gave Elijah the confidence, strength, and overall ability to do things that he never imagined he could do,” she adds.
Families Can Have Hope
Mom’s Resolve Means Families Can Have Hope
Spring in Minnesota means Lisa Evert can finally, after a long winter, take walks with her daughter, Jill Evert, who loves the outdoors. Evert strives to give Jill, now 19, as full a life as possible. But she acknowledges it’s a challenge.
At age 2, Jill’s development slowed and began to regress. “We quickly realized something was very wrong,” recalls Evert. Her search for answers led to Gillette Children’s Specialty Healthcare. Genetic testing confirmed Jill’s diagnosis of Rett syndrome, a complex disorder that affects brain growth and development and mostly occurs in girls.
Determined to bring Rett syndrome care and research closer to home, Evert turned to Gillette. “I felt like I was asking for the sky,” she says of approaching Gillette about establishing a formal Rett syndrome clinic. “Looking back it was the perfect fit because Gillette already offered those services.”
Gillette established its Rett syndrome clinic in 2006 and has become increasingly involved in research aimed at understanding the disorder and alleviating its symptoms. “Girls who have Rett syndrome got dealt a bad hand,” explains Evert. “We’re working the magic of doctors and researchers to bring families hope.”
National Recognition for Research
Rettsyndrome.org, a national organization focused on advancing research, designated Gillette as a Clinical Research Center of Excellence in 2016. The designation, held by only 14 U.S. hospitals, is given to hospitals with robust research, family education, and clinical services. “We’re collaborating with hospitals across the country to bring the latest Rett syndrome treatments and therapies to Gillette,” says Tim Feyma, MD, a Gillette neurologist.
Read more about Jill and our Rett designation on Kids Health Matters.
Can Conduct Groundbreaking Drug Research
Gillette Children’s Specialty Healthcare is playing a key role in the clinical trials and research into Spinraza™, also called nusinersen, a drug recently approved by the FDA to treat spinal muscular atrophy (SMA). Parents of children who have SMA are calling the development the first real hope to improve their childrens' futures.
Biomedical company Biogen approached Gillette in 2015 to participate in the “Embrace” clinical trial for the drug Spinraza.
Randal Richardson, MD, pediatric neurologist, is the Neuromuscular Clinic director for Gillette and says he’s pleased and surprised the Food and Drug Administration (FDA) approved Spinraza so quickly.
“I very openly tell people that this is probably the most important project of my life,” Richardson says.
SMA is a muscular disease that affects the motor nerve cells in the spinal cord and gradually takes away children’s physical strength.
Gillette was among a limited number of providers involved in the expanded access program to treat patients with SMA type 1 before the FDA officially approved the drug. As part of this program, Gillette obtained Spinraza free of charge from Biogen, and did not charge the enrolled patients or insurance companies for the procedural or professional costs.
Spinraza is an expensive drug. At the time of this publication, insurance companies and government agencies were still determining how to cover the drug’s costs for patients. Gillette has no involvement in, or influence over, the price Biogen set for Spinraza and is working hard to help families navigate the insurance issues involved with getting coverage for the drug.
Gillette Prone Cart Proves Our Employees Can Innovate
At Gillette Children’s Specialty Healthcare, children who have cerebral palsy sometimes undergo selective dorsal rhizotomy surgery to help reduce tight muscles (or spasticity) caused by the condition.
Following surgery, they first spend several weeks using something called a prone cart when they’re not in therapy sessions. Lying flat on the stomach (also called a “prone” position) can contribute to good surgical outcomes.
Gillette rehabilitation therapists first envisioned a prone cart just for kids in 2009. In 2016, the Gillette Prone Cart received a patent from the United States Patent and Trademark Office. With expandable length, an adjustable handle and other built-in features, the new carts make exploring the hospital or wheeling to therapies a breeze.
The Gillette Prone Cart is now available for purchase by other health care organizations for patients who undergo rhizotomy surgery and other procedures that require children to be prone for long periods of time.
A Message from Our CEO and Board Chair
Organizations have anniversaries, but at children’s hospitals we have birthdays.
When Gillette Children’s Specialty Healthcare was established in 1897 it became the first state-supported hospital in the country specifically devoted to treating children who have disabilities. Now an independent hospital, it seems worthwhile to reflect and celebrate our 120th year.
Those who founded Gillette didn’t do it to make money and they certainly didn’t do it because it was easy. They did it because they recognized that there was a patient population that required care focused on their unique situation.
They did it because it was the right thing to do.
In this way, Gillette is a fundamentally Minnesotan idea. An organization grounded in the principle that we exist to do right by one another. That we take care of our own. This notion is central to our mission and it’s what has sustained our organization to this day.
At Gillette we treat children who have some of the most complex illnesses imaginable. We see those who have cerebral palsy, spina bifida, epilepsy and other muscular, neurological and skeletal disabilities. Many of our patients have overlying conditions for which there are no cures.
Most of our patients will require continued care and therapy throughout their lives, but we don’t look at our kids as problems that need to be solved. Some might see the wheelchair or the brace and forget the child inside it. But we meet our patients where they are, truly see them and try to help them get to where they want to be.
That’s why we’re here. It’s what makes us special and it’s why our work continues. It was the right thing to do in 1897 and it’s the right thing to do today.
Too often our patients and families are pushed to the margins of our society. They’re missed. Or simply left out. Those who founded Gillette and those who work here now believe this to be an egregious error.
Anyone who has strolled through our hospital halls and spent even five minutes with our patients will see their innate value to our society. We believe that by helping our patients reach their potential, we are improving our communities, states and world.
From the bedside to the boardroom, every member of our staff—whether they come from Minnesota or not—possesses this collective ethos and vision. Though our roles vary, the mission is shared.
And that’s where you come in. Because of your generous and continued support we’re able to provide world-class expertise and knowledge to our patients. Thank you for helping us continue to explore new treatment options, conduct research that advances care, and advocate for communities to welcome and embrace people of all abilities. At Gillette we believe that necessity can spawn innovation; and your support accelerates our efforts.
Because of you our patients are able to show us all that they CAN do. It’s a lot. Just ask them. Or better yet, just keep paying attention. It’s hard to miss.
President and CEO
Gillette Children’s Specialty Healthcare
Board Chair, 2016
Gillette Children’s Specialty Healthcare
As a not-for-profit hospital, Gillette Children’s Specialty Healthcare is committed to efficiently using donor and taxpayer dollars to provide high-level care to our patients. We’re dedicated to being good financial stewards to keep us sustainable for the future. We’re pleased to share our fiscal year 2016 consolidated financial statement of Gillette Children’s Specialty Healthcare and Gillette Children’s Foundation. If you have any questions about this statement, please contact James Haddican at 651-312-3105 or JHaddican@gillettechildrens.com.
Revenue and Expenses