Brothers Ben, 11, (l) and Jake Swomiak, 13, pause on their way to celebrate Ben’s birthday. Both boys were born with Duchenne muscular dystrophy, a disorder characterized by rapid muscle degeneration. When Jocelyn Canale was 3 years old, doctors told her mother that she would probably not make it to age 4.
Diagnosed with a form of leukemia, later found to be Niemann-Pick disease type B, the young Jocelyn not only made it through that year, but continued to thrive.
“I told my mother at the time, ‘God let me live because I have a purpose,’ ” the Millstone resident said.
Now, many years later, Canale understands that purpose. Her two sons, Jake and Ben Swomiak, 13 and 11, respectively, both have Duchenne muscular dystrophy (DMD).
The terminal disease, more common in boys than in girls, causes muscles to progressively break down until they eventually die. Typically between the ages of 8 and 12, those with DMD lose the ability to walk, as Jake — who now gets around with a power wheelchair — did at 11. The heart and lung muscles are also affected by DMD, which is why most boys with the disease don’t live past age 20.
Jocelyn Canale and her son, Jake Swomiak, 13, share a smile. “I tell my mom, ‘God had a reason, because he knew I had the strength to deal with the boys,’ ” she said.
Although the single mother seems the epitome of strength and resilience, recent events have taken a toll on Canale.
Her estranged husband had not been a part of the boys’ lives — physically or financially — for the past six years. When he died a few months back, it was a blow to the boys.
“My older son looks at me and says, ‘Mommy, now I’ll never see him,’ ” she said.
One seemingly positive aspect of his passing was that Canale would qualify for survivors benefits from Social Security. Because her constant caregiving for the boys does not allow her to work, this appeared to be a huge boon for the family.
Unfortunately, it was quite the opposite. The modest income provided by the benefit was enough to make the boys lose their crucial Medicare insurance.
“I’m like, ‘What else can happen?’” she said. “I know there are families out there who have two parents making a certain amount of money and the kids are fine, and they’re covered. They should make it that children like this are covered.”
According to Canale, DMD is one of the most expensive diseases with which to contend. Both boys take a corticosteroid to keep the progression of the disease at bay, and a multitude of equipment is necessary for Jake to go about his day-to-day activities.
A chairlift brings him up and down the steps of Canale’s parents’ house, where they live. A device called a Beasy Transfer Board helps Canale, who has a double hernia, to get Jake in and out of his chair. Thanks to monies raised, along with help from the state Catastrophic Illness in Children Relief Fund, she was able to purchase a special van that can accommodate Jake’s chair.
Canale has run into countless dead ends in trying to secure insurance for her sons. After spending the entire month of July with no family coverage, she is now paying for scant coverage under N.J. Family Care D. Under this plan, she is no longer covered for the boys’ necessities, such as equipment and the home aide, who has provided indispensable assistance for the Canale family.
In addition, both boys will eventually require $30,000 respirators as the disease progresses.
People have told her that her health insurance nightmare will be alleviated when the boys turn 18.
“I need to get them to 18,” she said. “[Ben] is getting weaker. He almost can’t get off the floor anymore. I say, ‘If he can’t get a power wheelchair, what am I going to do?’ ”
Thankfully for Canale, she has the support of her mother, Florinda, and father, Vincent, who has become a veritable encyclopedia of knowledge about DMD. However, they are elderly, and Vincent’s back problems prevent him from helping with Jake’s transportation.
“I have my family, but sometimes I feel so alone in this,” she said.
Others in the community have rallied around the family, according to Canale.
“Thank God we have gotten the community out,” she said of various fundraising events held in the boys’ honor.
In addition, an eight-member committee, which includes her parents, ensures that the family is never alone in their struggles. “To me, they’re more than a committee,” she said. “They mean a lot to me.”
The dedicated committee is comprised of good friends and fellow Millstone residents Marybeth and Brad Drew; James Wishbow; and Susie and Richard Ousley, along with their daughter Allison.
The Drews’ son Danny, who attends Millstone Township Middle School with Jake, brought the two families together. He saw something happening to Jake at school that he didn’t like, and stood up for his newfound friend. From there, he and his mom Marybeth met with the schools’ superintendent to initiate fundraising efforts for the family.
“Danny has been a blessing to Jacob,” Canale said, adding that he goes out of his way to be a friend and bring a smile to Jake’s face whenever possible.
Of course, things aren’t easy for the soon-to-be eighth-grader, although Canale explained that Jake was able to accept his situation to some degree when he became confined to a wheelchair.
“Jacob gets very quiet,” she said. “He really thinks a lot.”
Ben, a bubbly, rising fifth-grader at Millstone Township Elementary School, has differing circumstances.
“Benjamin is very spunky,” she said. “He really doesn’t realistically believe he [will lose the ability to walk].”
Although he becomes weaker as time goes on, Ben still tries to run and jump. Canale said she had to deny his request to play baseball, however, because if he breaks a bone, it won’t heal.
“It’s going to be very hard on Benjamin,” she said.
While acting as her sons’ constant caregiver and shouldering the worry over their health, Canale must consider her own health as well. With her disease, it’s especially important that she stay healthy, yet she has no insurance coverage, and the family’s finances are a constant burden.
“My children are my life, 24/7. It’s hard,” she said. “But they’re my children, and I do what I have to do. I have a lot of faith.”
Fortunately, the Millstone-based nonprofit, Friends and Neighbors in Action (FNA) is seeking to help Canale and her boys. The organization holds an annual 5K to help those who suffer from serious chronic or debilitating diseases.
This year’s event will benefit the Medical Trust Fund of Jake and Ben Swomiak, along with the Parent Project Muscular Dystrophy (PPMD), an organization that puts all donations directly into researching a cure, according to Canale, who works with PPMD and other organizations to spread awareness and advocate for patients.
The Sept. 22 event, to be held at Thompson Park in Monroe Township, welcomes walkers, runners, sponsors and volunteers to join in the worthwhile efforts.
“Now more than ever, I need this trust,” Canale said.
To register online or make a donation, visit www.FNA5k.com. Visit the website at www.jakebenmd.com to learn more about the boys, and www.parentprojectmd.com for more information about the organization.