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By Jacqueline Lisk
Many aspects of life slowed down during COVID-19. Duchenne Muscular Dystrophy (DMD) did not.
The rare and fatal genetic disease continues to progress for Conner Curran, age 10. Although the pandemic makes it harder, Conner’s parents, Jessica and Christopher, continue to lobby for legislation, to fight for funds, and to keep hope alive for themselves, for Conner, and for families like theirs.
Duchenne is characterized by progressive muscular weakness and typically affects boys. Most kids with the disease are in a wheelchair by age 12 and don’t live past their mid-twenties. Conner faces Duchenne with a bright smile and a fortitude beyond his years.
“He goes through all the poking and the prodding with a huge smile on his face,” Jessica says. “I remember one time, he fell, and he saw me getting really choked up. He looked at me and he was like, ‘Mommy, I’m fine. I’m fine. Look at me.’ He made me look at him. He was trying to help me.”
Christopher admires his son’s persistence. “He has this never-give-up attitude, and for Duchenne, that is exactly the attitude you need. I mean, he never wants help. He always says, ‘I can do it.’ And he will, even if he has to struggle and struggle and struggle. He just never gives up.”
Simple things are hard for Conner, like walking up the stairs or getting into a truck—things that are easy for his twin brother, Kyle, and younger brother, William. But Conner takes challenges like these in stride. He loves life, and his joy is a gift to his parents and anyone who meets him.
The unexpected upside of COVID
COVID-19 was scary for the Currans at first. Conner is high-risk, so they have to be careful. Schools are open in the family’s hometown of Ridgefield, Conn., but the boys are all learning remotely to minimize potential exposure.
Safety precautions during the pandemic haven’t been all bad, Conner says. “I like learning from home because sometimes I’m afraid I might fall again at school.”
Plus, he gets to have recess with Kyle every day, and he has more time to play Madden on Xbox or football outside with his family.
Jessica sees silver linings, too. “With COVID, our lives have slowed down. We’ve actually been able to spend more time with each other, and although time is against us, we also got some time back,” she says.
Jessica is a first-grade teacher, and Christopher works for the town of Lewisboro, New York. In addition to their careers, they are full-time patient advocates. Before the pandemic, they traveled the country for Conner’s care, and to lobby for research and funding.
Since Conner’s diagnosis in 2015, the Currans have raised more than $800,000 for DMD research, in part by running an annual fundraiser, Kindness over Muscular Dystrophy. This year’s event was canceled due to COVID-19, and donations are down, but the Currans never give up.
In between working, parenting, caring for Conner, and savoring family time, they have managed to advocate for the Affordable Care Act (ACA) and Duchenne awareness. This summer, Conner spoke with MSNBC and other outlets about the importance of ACA and with NPR about the experimental gene therapy he has been receiving since 2018.
Conner explains why he champions the Affordable Care Act: “I need it to survive and other people need healthcare to be healthy, too. I want to help others that are like me keep their healthcare. I know it costs a lot of money when I go to the doctor.”
Hope in heroes
Conner may play in the yard with his brothers, but he sits on the sidelines and watches when they play basketball or lacrosse. Jessica says he rarely complains.
“He’s like a wise old soul, I think because he spends a lot of time with adults, going to so many appointments and traveling. I think he knows more about what is going on with his body than we realize.”
Now that Conner is on a laptop for virtual learning, he has easy access to Google. Jessica thinks he has been researching Duchenne, which had led to some painful discussions. They are always honest with him—about the disease and about why they are hopeful.
“We tell him, Conner, we really believe that your outcome’s going to be different,” she says.
The family’s faith in God gives them strength and solace, but they also put their faith in science. Promising clinical research is underway for DMD and other rare diseases. This summer, Jessica joined the board of Cure Rare Diseases (CRD), a nonprofit biotechnology company that develops customized therapeutics for people with rare genetic diseases that have no cures. CRD founder, Rich Horgan, brought new hope to their lives. Horgan started the company to try to save his brother Terry, who has been battling DMD for almost two decades. Jessica is confident Horgan’s work will help Terry and countless others.
The Currans are thankful for Horgan and all the everyday heroes who make their lives easier; including Conner’s grandparents, who help the boys with home school; Conner’s great-grandfather, who helps with medical costs; and friends and family, who have donated time and money to finding a cure.
Christopher describes a DMD cure as “a prize that is just out of reach,” and something they desperately need to change the course of the disease “so that maybe Conner could live a full life with enough muscle strength to hug us, to walk, to move without exhaustion.”
There is no time to waste. Conner continues to decline because that is how DMD works. Or at least that is the way it has worked. The Currans believe the future will be different, for Conner and thousands like him. Despite COVID-19, or any other obstacle, they will do whatever it takes to find new treatment, while living each day with gratitude and grace.
It is easy to see where Conner gets his smile.
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