Families Moving Across The Country To Help Their Kids With Disabilities
Like early American pioneers, Richard and Carol Wygand felt the call to head west, to a strange land where they wouldn’t know anyone but each other, where the weather would be stinging and colder than they’d ever known. It would be a risk. But earlier this year, they packed up their Wellington, Fla. home, strapped their son Luke into his car seat, and set out on a long journey to Colorado to start a new life.
And to save Luke’s.
“It’s a bittersweet decision,” Carol says. “We’ll be building up from scratch. I don’t really care as long as Luke’s OK.”
Advertisement - Continue Reading Below
The couple, both former professional triathletes born in Brazil, uprooted their lives so that Carol could qualify for Colorado’s caregiver CNA (Certified Nursing Assistant) program through the state’s Medicaid system. It pays her to train and become the full-time caretaker of their 20 month-old son, who was born with Nemaline Myopathy, ACTA 1 mutation, a muscle weakness that affects Luke’s ability to swallow or breathe, requiring him to wear a tracheotomy tube.
The Wygands left everything and everyone they know to settle in Broomfield, Colo. because the state offers a Medicaid related program that will train and pay Carol to be Luke’s full-time caretaker. They’re just one of three Florida families that spoke to The Palm Beach Post about making that choice for the sake of their children.
Colorado is not the only state in the union that offers similar programs — a study by the Office of Legislative Research of the Connecticut General Assembly showed that at least 42 states offer at least some limited payments to family members for caring for a relative. But it has become popular because of a recognized holistic approach to health and even for the availability of legal medical marijuana, which some of the families have relied on for relief for their children.
“This solution is a win-win because it helps with ‘access to care’ for these Medicaid members, and family members don’t have to work outside of the house only to give their wages to pay someone else to care for their dependent. If you’ve ever taken care of a parent or child, you know that is a full-time job,” says Marc Williams, spokesman for the Colorado Department of Health Care Policy and Financing.
It is exceedingly difficult to find specific numbers of how many people have moved specifically to Colorado or any other state because “when people go through that training and apply for licensing, there’s not a box that they check” that specifies whether they relocated, Williams says.
But for many families and medical professionals, it makes sense that parents would do anything in their power to make sure their children were adequately cared for — by them. “Who will take better care of your child than yourself?” says Dr. Caecilia Garcia-Perez, Luke’s pediatrician in Florida since he was an infant. “These parents go through so much, it’s mind-boggling.”
Through Facebook pages, the Wygands were able to tap into a community of families who participate in the Medicaid program, including two from Palm Beach County whose stories have been instructive to them.
Rachel Mohlman and partner Jeremy LaMott, as well as some of their extended family, made that change last May, moving from Lake Worth, Fla. to Colorado Springs, Colo. Like the Wygands, they didn’t know anyone there. But they knew that daughter Riley, 7, who has cerebral palsy, needed her help full-time, something that was hard to do while Mohlman was working full-time as a massage therapist.
After more than a year, Mohlman says that “it’s the best thing we have ever done. I can be her in-home nurse.”
Another factor was that Riley, who had her first epileptic seizure when she was just hours old, had been on prescription drugs to control them. But after doing research, her parents found that a medical marijuana oil would be able to help ease the seizures. She didn’t qualify for it through Medicaid in Florida, but does in Colorado.
“Being on the medical marijuana has changed Riley’s life. She’s been in physical therapy since she was three weeks old, and she now has the muscle tone to do things she could never do, like riding a horse without anyone holding her,” she says. “She’s scooting on her butt down the hall, and can do (activity) for much longer. She had her last seizure
two years ago.”
Mohlman and LaMott’s family, which includes son Jack, 1 1/2 years old, are what’s referred to as medical marijuana refugees, one of thousands who have moved to states where medical marijuana is legal. Some of these families have formed networks that connect them with like-minded doctors, real estate agents and more. According to a 2014 CNN report, more than 100 families had moved to Colorado for medical marijuana within an eight-month period.
“Unfortunately, this happens quite often. Many families are forced to relocate for the love of their family (or) family member,” says John Malanca, founder of United Patients Group, a California-based advocacy group for physicians and patients navigating the medical marijuana process.
Stephanie and Christian Patriarca are another Florida family who relocated, selling their Lantana, Fla. pizza parlor, A Bronx Tale, in December 2016 so that daughter Sofia, now 4, could try two of the cannabinoid oils, THC and CBN. Moving was not an easy decision, but it was a matter of time — time that Sofia, who was having hundreds of seizures a day, didn’t have, her mother says.
“We were looking for doctors but no one would sign off on the oil for Sofia,” she says. “They told us that any seizure could kill her. Florida was taking time to figure out the legislation, and we felt like she didn’t have another few months to figure it out.”
Within weeks of moving to Colorado Springs, they were able to purchase the oils, and “our daughter has absolutely flourished. She has far less seizures than she did. And she’s able to communicate with us and do all these things we were told she would never do,” she says.
The Patriarcas, also the parents of Aliana, 10, and Giovanni, 6, opened a restaurant in Colorado. Stephanie took accelerated classes to graduate with her nursing assistant’s degree, and started working the next day. She admits that “the holidays were a little tough, because usually it’s 15-20 family members but it was just the five of us. But I have no regrets. It’s all been amazing.”
Amazing is something the Wygands are looking forward to. As much as they cherish their time with Luke, a smiley kid named after “Star Wars” legendary Jedi knight Luke Skywalker, his condition, and his parents’ physical and financial ability to manage it in Florida, have had a great impact on the family. Richard, an Ironman-winning athlete, lost clients in his personal training business because Luke requires round-the-clock care.
And Carol, an attorney in Brazil who was a local triathlon champion there, worked her job as the account manager of a translation company from home and even from the hospital when Luke was ill, but was eventually fired. “My boss said ‘I think you should be with him … without pay. And not come back,'” she says now, laughing wryly.
Meanwhile, Luke was getting stronger, but his parents were running out of money and exhausted. Richard began driving Uber, “but these were not long-term solutions,” he says.
So Carol started doing research online and found information on the Medicaid program in Colorado, the site of “one of only two vacations we’ve ever taken.” They chose Broomfield, a city “about the same size as Wellington” in the Denver area, because it’s near Children’s Hospital Colorado in Aurora, which has a breathing team.
“It’s very comforting to me that they have this great opportunity,” says Silvia Wygand, Richard’s mother. She and Carol’s mother, Liliea Monteiro, both traveled from Brazil to Florida several times in their grandson’s young life to help out, and traveled to Colorado to help the family settle in before returning to Brazil. “This gives us some sort of joy, to know that they will be supported.”
And so far, they have been. After about a month in Colorado, Carol Wygand reports that the family has made some adjustments, both to the weather and to their new medical team. Richard, who has now trained as a life coach, will maintain several of his Florida clients, and Carol will work with Luke.
“We did end up in the ER (during our) second week, but all the tests came back negative and Luke was only dehydrated,” she says. “I think he wanted us to get to know the local hospital and them to know him. It was also the biggest snow day so far, so we had to learn how to drive on snow at night on that day. That was part of Luke’s plan, too.”
Whether or not that was young Luke’s plan, his parents so far believe they’ve made the right decision, finding their son “back on track and thriving. I think we are finally on the right path.”
© 2018 The Palm Beach Post
Distributed by Tribune Content Agency, LLC