Ever heard of Spinal Muscular Atrophy?
Neither had Staff Sgt. Kanaan and Kari Merriken a little more than a year ago.
Their son, Caleb, was born June 3, 2008 — “the best day of my life,” Kari said.
“The first few months of his life were relatively normal,” she said. “He rolled over at 12 weeks. He was able to sit up at 5 months. He crawled at 8-and-a-half months.”
But when he wasn’t walking at the 16-month mark, his doctor was concerned.
“So we began that process of seeing all these specialists in different places,” Kari said.
The Merrikens’ journey to find out what was causing Caleb’s problems led them to a geneticist, a gastroenterologist and a neurologist, among others.
It was March 2010 when the Merrikens first heard that Spinal Muscular Atrophy, a progressive neuromuscular disease, might be behind their son’s difficulty eating and walking. Caleb was hospitalized June 7 after the diagnosis was confirmed.
Since then, the family has tried to share their story with others, letting people know about the disease and how they can support the search for a cure. Their efforts culminated in the SMA 5K Eat ’n’ Run fundraiser Saturday, which drew more than 600 participants.
“No one knows what Spinal Muscular Atrophy is, so we’re trying to bring awareness to everyone,” said Kanaan, with the 75th Ranger Regiment. “They’re close to a treatment within the next three to five years, so we’re also trying to gather money to support that.”
No one in either of their families had heard of the disease before, but now that they know about it, they plan to put that awareness into action, Kari said.
“A lot of people aren’t aware of this disease,” she said. “I know of four children in the area who have SMA including my son. SMA is the number one genetic killer of children under the age of 2.”
According to the Families of SMA, the parent organization the run was held under, the disorder affects about one in 6,000 babies. One in 40 people carry the recessive gene, even though they don’t have the disease. But if two carriers have a child, there’s a 25 percent chance the baby will have SMA.
“It’s not as rare as you might think,” Kanaan said. “My co-worker’s son has Spinal Muscular Atrophy Type I. He can’t move his legs. He can’t roll over. They have to have him on oxygen. He’s 11 months old right now.”
Of the four types of SMA, Type 1 is the most severe. Caleb suffers from Type II. Symptoms can include the inability to sit up, difficulty swallowing and coughing and decreased bone density.
“SMA is a genetic disease that causes the motor neuron cells in the spinal cord to die,” said Dr. Elizabeth Sekul, a pediatric neurologist at the Medical College of Georgia Children’s Medical Center, who has worked with Caleb. “It’s somewhat akin to a childhood ALS — Amyotrophic Lateral Sclerosis. It is primarily manifested by weakness which is progressive slowly in some patients and rapidly in others depending on the type of SMA they have.”
Current therapies for patients include careful attention to breathing, swallowing, positioning and orthopedic issues, Sekul said, but some of the studies underway point to medication that may slow the disorder.
So far, the Merrikens have helped raise $52,000 with the run, which is planned to become an annual event. Donations for this year’s run will last through the end of the month, but people can give any time, Kanaan said.
“Every small donation counts,” he said. “It’s all really for a good cause.”
Funds raised go to FSMA to directly support current research for a treatment.
“One of the hardest things for me was just knowing that according to the way the disease goes, they say most likely Caleb will not ever walk,” Kari said.
“He’s lost his ability to crawl. If a toy is out of reach, he can’t get it. Even his sippy cup is difficult for him to lift. The things like that really break your heart on a daily basis, but the thing that really gives me hope is the research. They really think a treatment has been reached but it’s just the lack of funds in getting there. Out of more than 600 neurological disorders, the National Institute of Health has selected SMA as one closest to treatment. That’s encouraging.”
Kanaan and Kari said they appreciated the community’s support, rallying around them for fundraising. Several businesses sponsored the 5K, which included live music, T-shirts and children’s activities.
“The hardest thing about having a child with a disability is feeling like people just don’t care, but what I’ve really seen is how much people (do) care. It helps you to know there are people who ... will fight with you,” Kari said. “As a parent who has a child with a disease for which there’s no treatment and no cure, what else can I do for my son than help raise money for a cure?”
To donate, visit www.fsma.org/healcaleb. Other families in the area who may be struggling with SMA are invited to contact the Merrikens at firstname.lastname@example.org. The next local fundraising event for SMA research will be a bike ride in April, hosted by the Columbus lodge of the Fraternal Order of Police.