While any single parent can attest to how hard it is to raise a child solo, Vancouver resident Michelle Gentis requires the strength, patience, perseverance, and caring of a whole team of moms.
Her son, Joshua, is severely disabled. He has an extremely rare genetic disorder—so rare that even though he’d started exhibiting physical signs by eight months, it wasn’t until this past fall that he got an official diagnosis, at age 14.
Living with hypomyelination with atrophy of the basal ganglia and cerebellum (H-ABC syndrome) means that, although he’s fully cognizant, his brain doesn’t communicate properly, leaving him essentially trapped in his body. Joshua needs help with even the most basic daily tasks and cannot speak.
“After we got the diagnosis, his doctor said, ‘It’s the hardest of the hard,’ ” Gentis tells the Georgia Straight by phone. “He’s fully aware and engaged emotionally and intellectually, and he’s socially keen—he loves people and wants to fit in—but his body doesn’t respond as it should.”
Gentis, who describes her son as a bright kid with a great sense of humour, admits that the stress, worry, and heartache that come with caring for him are sometimes unbearable. And although manoeuvring a teenage boy in and out of a wheelchair and constantly coming up with creative ways of communicating with him take a physical and emotional toll, there’s another aspect of bringing up a child with an extreme disability that many people may not appreciate, and that’s the financial hit.
Given that Joshua needs help with everything from toileting to eating and that he routinely goes to medical appointments, including those for physical therapy, it’s impossible for Gentis to work full-time. (She works part-time for her dad.) Then there are the extraordinary costs she faces for things like bathing equipment and mobility aids, including a wheelchair.
“When you have a baby, you can’t wait to get a baby out of diapers; that’s a fortune per month,” Gentis says. “From there, expenses increase exponentially. Think of the simple joy of riding a bike. For most families, you can get a bike on craigslist for 25 bucks or go to Costco. For Josh to have a bike—which has played a massive role in his rehab, it’s physical therapy—it cost $3,500.”
He also needs a walker and a standing frame to keep him upright in certain situations. What many people do not realize is that the government only covers a fraction of such expenses.
That’s where Variety - the Children’s Charity comes in. Established in 1927, it raises funds to help children with special needs and organizations that provide support and services to those kids throughout B.C.
The charity allows families to access life-changing medical care, services, and therapies as well as specialized camps and educational programs.
Variety has made a huge difference in Joshua’s life. Since 2008, it has provided funding for a Kidwalk Mobility System, vertical stander, a sit ski, a manual wheelchair, physiotherapy, and other items and therapies.
“People think that the government provides way more than it does,” Gentis says. “No other single organization has had a bigger impact on Josh’s quality of life than Variety. It’s a lifesaver.”
Gentis has turned to the sport of running to raise awareness of the great challenges facing families with disabled children. While pushing her son in a special wheelchair, she has completed several races and half-marathons. The two are the first mother-and-son duo team to qualify for the Boston Marathon.
In the meantime, they are participating in the Pacific Road Runners half-marathon taking place on Valentine’s Day, during Variety’s Show of Hearts Telethon. The annual event—this year celebrating its 50th anniversary with two live concerts—helps the organization fulfill its mission to provide direct help to children in B.C. with special needs.
Gentis and her son are determined to spread the word that the organization helps individuals and families not only function but also thrive.
“When you have a severely disabled child, you are just hanging on by your fingernails,” she says. “Variety steps in where health care ends.”