While many children delight in the Magic Kingdom, and magic shows, little Micah Moroney and her family are thankful for magic rods.
Born with a crippling genetic disease, spinal muscular atrophy, Micah, 9, is missing the gene that sends the signal for her muscles to grow. Spinal muscular atrophy is a form of muscular dystrophy.
She lives life in a wheelchair. She can’t walk. She can’t roll over on her own. It’s almost impossible for her to reach for things.
“Her muscles are sort of like baby muscles,” said Micah’s mom, Tonya Moroney. “They’ve grown as much as they can. As her body gets bigger her muscles don’t grow, so she gets weaker.”
After enduring five painful surgeries in her life, last August, Jeffrey Cassidy, MD, a pediatric orthopedic specialist with Spectrum Health Helen DeVos Children’s Hospital, inserted the magnetic rods.
For Micah, they truly have been magical.
“With her old rods, every year she would have to have a surgery to lengthen her rods,” Tonya said. “They had to surgically adjust the rods to how much she had grown in a year. It was extremely painful.”
Not to mention recovery time after surgery, which could take several weeks.
Dr. Cassidy uses a powerful magnet to lengthen the rods. No surgery required, just a quick visit to his office.
“It just grows her a little bit at a time,” Tonya said. “There’s no pain with it. It’s pretty amazing.
“Every three months we go back to grow a little more,” she said. “It takes like one minute. Before, when she had surgery every year, she was always in a lot of pain. It really cut into our whole summer because she always had surgery at the beginning of August. We’re really excited to have our summer back.”
For the first time in years, we are excited for the future.
Micah can now spend her summer swimming instead of suffering. It’s one of the few sports she can participate in and also one of the best for her body.
“Swimming is the best therapy for Micah and the only time she can move her whole body,” Tonya said. “No swimming for the whole month of August was frustrating. We can’t believe how easy this new process is. This technology is truly amazing. It’s been life-changing for us in so many ways.”
Hoping and praying
Another potentially life-changing breakthrough is floating in this summer, when Micah is scheduled to receive the new drug Spinraza. The drug will be injected directly into her spinal fluid.
“This is the first-ever treatment for SMA,” Tonya said. “It’s ground-breaking for the SMA community and we are hoping, at the very least, it will slow down the disease. For the first time we have hope that she could gain some valuable strength back.”
They’re hoping and praying. Hard.
Their wish is for the simple things that most others take for granted. They want Micah to be able to roll over on her own and pull her covers up at night.
“We pray that the drug will strengthen her arms and her core strength,” Tonya said. “It would be life-changing. For the first time in years, we are excited for the future.”
The drug proved promising during clinical trials. It works by stimulating a protein that signals muscles to grow.
“Every child is different, but we’re hoping it will at least slow it down so she can keep the function she has,” Tonya said. “And if she gains some things from it, that would be wonderful.”
Despite her physical difficulties, Micah’s mind is sharp.
She loves to sing and draw.
“She’s really a bright little girl,” Tonya said. “She’s very creative. She’s very kind. She loves to read and loves to swim. She’s personable. She’s just a really bright, fun little girl. She’s a normal, typical child that uses a wheelchair.”
Tonya has researched and studied the disease, learned every nuance of it.
Because she and her husband, Robert, are both carriers of the gene mutation, each child they have has a 25 percent chance of suffering from spinal muscular atrophy.
Their son, Charlie, 7, does not have the disease.
“We were pregnant with him when Micah was diagnosed,” Tonya said. “We were very fortunate. He is a carrier of the gene, but he is not affected by it.”
Charlie loves helping his big sister.
“If Micah falls over in her chair, he’ll run over and help her,” Tonya said. “He’ll help her pick up things off the floor. He will open the door for her.”
The Moroneys try to keep life as normal as possible for their family, ever mindful that Micah is at great risk for respiratory infections and pneumonia.
They’re also mindful of the most bitter statistic. They hope to pray their daughter beyond it.
“The textbook prognosis for a child with Type 2 SMA is age 20,” Tonya said. “There’s a lot more out there to help kids and keep them living longer. I think she will live past the age of 20. I’m hoping. It just depends on how healthy she stays.”
Still, it’s a gnawing statistic. And the reality of daily life can get frustrating, too.
“With any child who has gone through, ‘Why can’t I walk? Why am I different?’ there’s a grieving process,” Tonya said. “She’ll get upset sometimes. She just wants to be like other kids.”
Dr. Cassidy said the magnetic rod technique was approved for use in the United States two years ago, after originating in Europe a decade ago.
“There are overlapping rods that are coupled by a magnet,” Dr. Cassidy said. “When an external magnet is held over the skin, the rods will lengthen in relation to one another. They’re anchored to the spine at the top and bottom. It allows their spine to lengthen over time and their chest to grow over time.”
The rods allow Micah to sit up, something she couldn’t do prior to the surgery.
Dr. Cassidy said he’s pleased with Micah’s progress.
“She’s doing very well,” he said. “Her (spinal) curve is completely under control and shouldn’t pose any health problems for her.”