written by Melissa Roberts Weidman
Special to The Call
Jared Cournoyer gets a big hug from his No. 1 supporter, his mother, Tammy Cournoyer.
Nicknamed "Woonsocket's Superman" because doctors gave him little chance of making it to age 10. Jared Cournoyer, now 28, has overcome obstacles much greater than any tall buildings thanks to boundless love and family support.
The Cournoyer family lives in a house like many others in Woonsocket. Located in a historic working class neighborhood that was in its heyday generations ago, its well-worn front door welcomes you to a cozy living area. There are family photographs, memorabilia, comfortable chairs. But that’s where all similarity to your typical living room ends—as soon as you enter, you see oxygen tanks, blinking lights and a hospital bed covered by a bright day-glow image of Superman.
That bed belongs to a real-life Superman. Jared Cournoyer is 28 years old, an age his doctors said he would never reach. Born with Noonan Syndrome, a rare genetic condition, Jared bears the disease’s classic symptoms of short stature, webbed neck and fingers, flattened features and head. He weighed only 9 pounds at a year old. He didn’t walk until he was 4 years old and potty trained at 13. But by then, he’d already outlived his prognosis to die by the age of 10.
His mother Tammy Cournoyer recalls, “When he was little, the doctors said he’d never walk, talk or feed himself. They said we should send him to an institution because we could never take care of him ourselves. But we proved them wrong, didn’t we?”
Very wrong, indeed. It’s obvious that this family has dedicated itself to the care of their extraordinary young man. When asked to explain how much of a burden his care has been, Tammy responds with an uncomprehending expression. “Burden? It’s been no burden at all. Every day is a joy to be with him.”
Jared Cournoyer and family, from left: aunt Debbie Vilandre, mother Tammy Cournoyer, Jared Cournoyer, brother Devon Cournoyer and grandfather Robert Cournoyer.
That’s because Jared, like Superman, has super powers. These include the uncanny and undeniable ability to spread love to all who encounter him. Upon first seeing him from across the room, you might mistake him for an elf. Short and wiggly with a mischievous smile, he embraces everyone in his family with open-hearted warmth and they return it in full. His grandfather Robert Cournoyer, 82, a retired textile mill worker who Jared affectionately calls “Boompa”, lives in the household along with Jared’s two younger brothers Devon, 21, and Aaron, 23. Tammy, a single mom, works two jobs as a waitress and school lunch aide and takes care of them all. Her sister Debbie and brother-in-law Ronnie Vilandre live nearby and visit often to help.
The situation has taken on more intensity since February when Jared experienced a seizure and cardiac arrest. The doctors said there was little else they could do to manage Jared’s serious ongoing issues with his heart, brain and lungs. They suggested calling Hope Hospice & Palliative Care Rhode Island (Hope Hospice RI) to help. At first Tammy thought that calling hospice meant giving up. “I thought they would come and put him away in a place where he’d be left to die. But I soon learned that hospice is about quality of life and helping families like ours have the support we need to do this right.”
The services and medical equipment provided by the Providence-based non-profit have proven essential to the family being able to keep caring for Jared at home.
Tammy says, “Our hospice team takes care of everything. They gave us the bed, oxygen, wheel chairs, special tables, shower chair. The nurse comes every week and provides his medications. The social worker comes regularly and helps us with information and planning. And it’s all been covered by insurance so we haven’t had to pay out of pocket for anything. There’s no way we could do this without them.”
In turn, Jared’s super powers have worked their magic on his hospice team members. Hope Hospice RI clinical social worker, Bill Inlow, says, “I can’t believe I get paid to go in to this home—it’s such a privilege to be involved with him. In all my years doing this work, I’ve never seen a family like this. They’re all so dedicated they’ve given him an incredible quality of life—the love is obvious and infectious. The power of love—family sticking together, doing something remarkable—that’s what’s tripled his life span. You have to experience it; you can’t explain it.”
Fay Bush, Hope Hospice RI’s nurse case-manager, agrees that this is a most special family. She says, “Tammy works so hard to be an advocate for Jared so he can be independent. I swear she sleeps with one eye open to make sure his oxygen keeps going 24/7. She jumps countless hurdles to make sure each day counts. We are here to support the family so that if they have any bumps in the road, they always have someone to call.”
Jared’s brother Devon comes in to say goodbye before he leaves for one of his classes at the University of Rhode Island. “The hospice folks are always 100% attentive to Jared’s needs,” he says. “Making sure he’s happy and comfortable. He always gets what he wants and that’s what he deserves.” Then Devon and Jared embrace and slap a high-five.
Jared’s magic also extends beyond the walls of the house out into the community. Phil Cavanaugh, Past Exalted Ruler of Elks Lodge #850, says they were honored to make Jared a full member, giving him a special initiation ceremony. Jared goes there every Friday to sing karaoke, and on Saturdays can be found dancing by the stage to a live band. At Christmas, he dresses up as the elf he resembles to pass out popcorn to kids.
“Jared is a hot ticket,” Cavanaugh says. “Jared loves everybody and everybody loves Jared. The family does everything for that kid.”
And the community has done a lot too. When the Elks held a fundraiser for the family, 300 tickets sold out in 2 days. When Jared turned 28 in August, 100 people attended his taco/karaoke birthday party. He’s in the Special Olympics, the Woonsocket Wildcats and the bowling league. Several years ago his brother’s Head Start teacher was instrumental in getting the Make A Wish Foundation to send the whole family to Disney World for 10 days.
Jared’s love for music is one of his greatest passions. On Halloween this year, he dressed up as Michael Jackson. The year before, he dressed as Elvis. His favorite song isn’t the latest hit from Lady Gaga or Justin Bieber; it’s Bob Seger’s “Old Time Rock n’ Roll.” Like a true super hero, this child-sized but fully grown up young man transcends time with tastes and habits beyond the cultural limits of his age. Every morning when he gets up, he kisses the photo of his “MeMere”, his beloved Grandmother who died 8 years ago, and talks to her as if she’s still with him.
He has defied his diagnosis before and hopefully he can again. But for now, with the help of their hospice team, Tammy and the family know they have done everything possible to give him the best time for whatever amount of time they have together. The joy they take in that task is palpable and an inspiration to all who know them.
When you turn to leave their house, make sure to look at the van parked out front. The entire back end of the car is covered with big letters spelling out “Everyone Loves Jared.” Once you’ve met him, it’s a good bet that, like many in Woonsocket, you will love this Superman too.
Melissa Weidman is director of community relations and outreach for HopeHealth. She can be reached at (508) 957-0200 or MWeidman@HopeHealthCo.org.