When Ryan and Rebecca Wiggins of McClelland took daughter Maisy in for her two-month checkup, they figured she’d get a few shots and they’d be on their way.
Unfortunately, May 20 is a day forever etched in their memories, the beginning of a journey with a lot of heartache and hope.
Maisy’s muscle growth wasn’t progressing on schedule. After a trip to a neurologist and Children’s Hospital and Medical Center in Omaha, along with a two-week wait on genetic testing, the diagnosis came in: spinal muscular atrophy.
The condition is a genetic disorder that affects the control of muscle movement, according to the National Institutes of Health. It is caused by a loss of specialized nerve cells, called motor neurons, in the spinal cord and the part of the brain that connected to the spinal cord – the brainstem.
The loss of those nerve cells leads to weakness and atrophy of muscles used for activities such as crawling, walking, sitting up and controlling head movement.
The disorder affects about 1 in 8,000 people.
Rebecca Wiggins likened it to the child version of ALS, or Lou Gehrig’s disease.
“We hadn’t heard of it before all this,” Ryan Wiggins said. “There is no cure.”
Maisy must lay flat at all times, as her spinal muscular atrophy affects the respiratory system and sitting up puts too much pressure on the diaphragm. The couple must transport her in a car bed instead of a car seat.
The muscle atrophy causes an inability to swallow, meaning Maisy must be fed through a tube in her nose, though she’ll have a feeding tube surgically placed soon.
The disorder affects the body, not the mind, so Maisy is like any other 6 month old in many ways.
“She’s the happiest baby, she laughs, she’s happy,” Rebecca Wiggins said. “She just can’t move real well.”
Added her husband: “She’s doing good, she’s always smiling. It doesn’t affect her brain.”
“It’s like she’s trapped inside her own body,” he said.
Rebecca Wiggins said 90 percent of children with the condition die before their second birthday. Of the four types of the affliction, Maisy has the worst. But the Wiggins have met a number of families affected by the spinal muscular atrophy during their journey and have been encouraged often.
“We’ve met families that have kids that are 8, 9, 10,” she said. “They can’t move, but mentally they’re there. They’re surviving.”
The Wiggins are fighting, looking for every way to help.
With no treatment, the family looked at what they could do. They found a clinical trial and were accepted into a study in Chicago. The past three months have featured a number of ventures east.
Maisy is on her fourth dose of treatment, though the trial is a double-blind study – meaning both subjects and researchers don’t know who is receiving the drug and who’s receiving a placebo – and the Wiggins are unsure if they’ll see any progress.
“We don’t know if she’s getting the real drug or not. They won’t ever break the blind and tell us,” Ryan Wiggins said. “They said in three months should be able to see if she’s getting it, we should different things happening. It’s been an experience. We never thought we’d know so much about the medical field.”
The father said Maisy is starting to move her arms and legs more lately, which the family hopes is a good sign.
“Our big thing is, Maisy being in this trial is bigger than just Maisy. This drug could help a lot of families,” Rebecca Wiggins said. “We want this to create awareness. Awareness leads to more funding; funding leads to more research.”
Since the diagnosis the Wiggins have stayed home to be with Maisy. Ryan Wiggins took leave from his job with an auto glass installation business, while Rebecca eventually had to leave her job with a local college, with hopes of returning someday.
“We want to live every moment with her. We don’t know how much time we have left with her,” Rebecca Wiggins said. “Thinking about a year or two down the road, it’s scary. We live right now.”
A benefit to help the family with expenses incurred since Maisy’s diagnosis is planned for Saturday in McClelland.
The event on Main Street starts with a tailgate for the Iowa vs. Iowa State football game from 2:30 to 5:30 p.m. that will feature the Cy-Hawk Backyard BBQ Rib Competition, basket raffles, face painting, balloons and more. A street dance and dinner is planned from 6 to 10 p.m. that evening, with Plainsong Jane performing and pulled pork sandwiches on the menu.
The cost to attend is $15 for adults, $5 for youngsters 13 and under and free for 2 and under. The price includes dinner – with two sides, dessert and a drink – and admission to the tailgate and street dance. For more information email BenefitMaisyRyan@gmail.com.
Family and close friends organized the event.
“We’ll never be able to repay everyone for this. We want to thank everybody,” Rebecca Wiggins said. “It’s very special to us.”
Ryan Wiggins noted that the everyone in the McClelland community has been supportive.
“It means the world to us,” he said of the benefit. “Maisy’s definitely got an army behind her.”
The benefit will help. So too, hopefully, will the clinical trial. Maisy will keep on smiling, regardless, and the Wiggins will keep fighting for their daughter.
“We’re living on hope. There’s no treatment or cure. There’s no medicine. The only thing out there is the trial, and we don’t even know if she’s getting the real drugs,” Rebecca Wiggins said. “All we have at this time is hope.”