Patient Stories:Gus

Patient Stories:Gus

“Gus doesn’t say hi,” Tonya explains about her boisterous ten-year-old. “It used to be ‘Wolfie’s cute!’ and his stuffed animal Wolfie thrown at whoever came to the door. Now it’s ‘Wanna see my jungle room?’”—a bedroom just as it sounds, decorated as a jungle with strategically placed animals ready to pounce on you.

Gus loves his stuffed animals, and so far he’s already acquired what he describes as “Way too many to count.” But that’s OK he says reassuringly, “Because they keep me safe when I'm sleeping.” Besides proclaiming their cuteness and throwing them in the faces of unsuspecting visitors, Gus has a number of other specific activities he likes to do with his stuffed friends. “He sets up all the animals in the house with musical instruments,” Tonya says. “And he’ll put on a song—for a while it was Boston, he loves Boston—and then he’ll walk around from animal to animal, moving their hands on the instrument. He’ll do it for hours. And he’ll make signs with the name of the band: ‘The Stuffed Clappers’. He’s been doing it since he was three.” His new hobby is making stop-motion videos with an app he downloaded onto his dad’s iPhone. The theme of these adventure videos is usually “Jurassic Park safari”, where plastic dinosaurs suspended from strings taped to the ceiling fly around towering Lego structures, under which Hot Wheels race cars ride around on an elaborate system of wooden train tracks. A child’s paradise.

Gus’ creativity has made him a favorite playmate amongst his peers. “He can’t play tag, or do everything the other kids do,” Tonya says. “But his friends are attracted to him for his imagination. It’s a great coping mechanism.”

Since Gus was diagnosed with Duchenne muscular dystrophy at age five, Tonya has stayed at home with him. When Gus is in school, Tonya plans fundraisers to raise money for medical research and coordinates his care. “Who better than I to take care of my own child?” Tonya says. “It makes our family life so much more normal, rather than having someone else coming in.”

As a toddler, Gus showed signs of slow physical development, but his parents assumed it was due to the fact that he was born prematurely. “And when he was three and four we thought ‘He’s just a super mellow kid," Tonya recalls. “When we went for a walk he’d just plop down and look at the flowers.”

In 2010, Gus was diagnosed with Duchenne muscular dystrophy. The diagnosis came a week after Tonya finished 15 months of chemotherapy treatment for stage III breast cancer. A devastating time that left no opportunity for a break. “We had to hit the ground running,” Tonya recalls.

“Her cancer was very serious,” Steve explains. “But they still gave us three options of what we could do to beat it. That’s three more options than the doctors gave Gus.”

"To come off of that ordeal and hear the next week from another doctor that Gus had Duchenne was terrible, especially to have them say ‘There is nothing you can do’. [I thought] ‘You can’t tell me I can’t do anything to save my son! We are going to do something.’"

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In addition to Gus, Steve and Tonya have two other children, Isabel, 14, and Abe, 12, who are unaffected by Duchenne. The two siblings have different ways of coping with their younger brother’s diagnosis. “Isabel takes on a lot of responsibility and she understands what this means for Gus,” Tonya says. “Abe wants to be in denial about it. The only thing that he says is ‘I wish I had a brother I could wrestle with.'” Still, when faced with the question of what could be done to help Gus, the whole family rallied together to answer it.

They started with a yard sale. Everyone brought something to sell—friends, neighbors and acquaintances. “We raised $5,000,” Steve says. “And we wanted to do something good with that money.”

What they decided to do was start the Hope for Gus Foundation, whose mission is to fund research for Duchenne muscular dystrophy and work collaboratively, through the Duchenne Alliance, with other Duchenne-related organizations.

“It was important to do something in the face of being told there is nothing we can do,”

adds Steve, who in addition to his teaching job, now also serves as president of the Duchenne Alliance.

Their foundation was started just four months after Steve and Tonya received Gus’ diagnosis, and since then Hope for Gus has been going strong. “We are moving forward,” Steve says with conviction.

“There’s potential. We could conceivably save this generation of boys. We’re sort of in the championship game. We really don’t know if we’re going to win it. But we’re at least playing the game as hard as we can.”

The special bond that exists within the Duchenne community and Duchenne Alliance—thirty to forty foundations who collaborate to fund research—has been a huge support for Tonya and Steve and made them such an integral part of that “championship game.” Through their work with Hope for Gus, they have also found hope for themselves. “You get to see the kindness of strangers,” Steve says. “There’s this sacred bond between the donors and us and our responsibility for that money.”

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Connecting with parents who have children who are newly diagnosed with Duchenne is also a part of Hope for Gus. Parents who, like Steve and Tonya, refuse to accept that there is “nothing to be done.”

“I don’t think I could get up in the morning if I hadn’t gone to sleep the night before knowing that I’d done everything I could that day to save my son,” says Tonya boldly.

“You have this dream for your kids,” Steve shares. “That they’ll find fulfilling work and get married and have their own kids. And then one day it’s all gone. All of it. Everything they do is going to be a challenge. They are not even going to be able to walk out the door on their own. From a parental perspective this is astoundingly earth-shattering—to know what this child who you love is going to have to go through.”

Steve recalls a story about a recent family trip to Mexico. Right away, Gus noticed all of the stray dogs that were lingering around the streets. He said to his father, “Dad, when I grow up I want to move to Mexico and open up an orphanage for all the dogs so that someone can love them.”

“It’s these kinds of devastating moments,” Steve says, “where you say WHY is this happening to this child? He’s kind, he’s loving. His heart is so huge.”

“Then my sister-in-law said something that has stuck with me. She said, ‘Gus is a gift to the world. Everyone he touches he brings joy to. So that’s just how you have to think of it.’”

For their most recent fundraising event, Tonya led a group of eight on a Himalayan trek to Mt. Everest base camp. “I wanted to do something challenging, something I wish Gus could do,” Tonya explains. “It [was] a statement about our will as a community and the challenges Gus goes through…. I never felt like I was doing something really hard for me. My son is doing something hard every single day.”

“At this moment, my son is a perfect ice sculpture of himself. And he is slowly melting away,” says Steve.

“Hey Mom guess what?” Gus calls from the kitchen. “Did you know that they have red pandas in Nepal!?” Gus’ excitement over discovering that his favorite animal is native to the eastern Himalayas where his mom will soon be traveling is expressed by a celebratory dance with Cinci—a stuffed red panda. “Cinci,” Tonya explains, “got his name from Cincinnati,” a city the family has traveled to many times in order to see a Duchenne specialist. According to Gus, Cinci makes a wonderful travel companion. In response to being asked why his mom is flying across the world to embark on a grueling trek, if not to see red pandas, Gus replies: “To raise money to get better medicine for my muscles.”