Lucas is carrying on his parents’ healthy appetite for an adrenaline rush. Whether he’s scuba diving in the Florida Keys, paragliding off the top of a mountain, adaptive skiing, or riding in a motorcycle sidecar, Lucas is helping keep the adventure alive. As a young man, he has already traveled the world extensively. Karla and Dave, his parents, are on a quest to maximize Lucas’ forays in the world while he still can. Their only son lives with Duchenne muscular dystrophy (DMD), and he was first diagnosed at the age of four. Garnering a “can-do” attitude, his parents strive to get Lucas the best treatments while also getting the chance to experience the wonders of life with the proper accommodations. Losing the ability to walk is a recent and major recent milestone in Lucas’ journey with DMD, and regaining that ability is currently his top priority when it comes to the potential impact of new therapies. He now uses a scooter full-time, and asks for assistance more. However, when he’s playing with his friends, he barely notices that he’s any different. “Since I know a lot of people, it’s less of an issue,” he says. "People know I need help.” Receiving that assistance enables Lucas to do incredible things and keep his body and mind astute.
We want people to see the light like we see the light. We want to live in the positive of now, not dread what’s coming.
Richard, father | Living with Duchenne Muscular Dystrophy
More Information
![]()
For the Romitos, having three of their four children (all boys) living with the Duchenne muscular dystrophy (DMD) has forever changed the way they move through the world—individually and collectively. Dominic, Collin, and Kaleb are three brothers who share a unique bond and a veritable tome of lessons about living with the disease, handed down from one brother to the next.
Dominic, or Dom as his friends and family often call him, was the first of the Romito boys to be diagnosed with DMD in 2006, at the age of six. His diagnosis came at a pivotal moment. Collin, his younger brother, was a year old, and Jamie, their mother, was pregnant with another boy. As Jamie and her husband, Richard, began to understand what the diagnosis meant, they were immediately confronted with the fact that the x-linked disorder had a 50% chance of being inherited by Dom’s two younger brothers.
While the news was devastating, the transformation it caused for the whole family is remarkable. Dom’s experiences, from losing the ability to walk in middle school, to landing a managerial role on his varsity football team, have all been incorporated into Collin and Kaleb’s lives as they undergo similar transitions, giving them confidence to achieve their goals.
For Jamie and Richard, part of this metamorphosis was starting a foundation to support their family and others affected by the condition. The Romito Foundation has become a pillar of support for dozens of families in the state, focused on improving the quality of life for affected individuals, their families, and their caregivers. They continue to support their sons and their community with the Foundation, ready to navigate the next obstacle on the horizon.
At first, I thought nothing was going to change—we’ll just do things differently—but that was not the case.
Meghan, Noah's mother | Living with Limb-girdle muscular dystrophy type 2I
More Information
![]()
Through the wonders of modern technology—a video-game headset and controller—Noah and his best friend remain in contact on a daily basis despite the pandemic. The buds have been separated not only by social distancing, but because Noah and his family recently made a move to a larger, more accessible house in a new town on the south shore of Massachusetts.
The new house, with all its mobility features, was necessitated by the progression of limb-girdle muscular dystrophy type 2I (LGMD2I), which has weakened Noah’s muscles over time. With a stair lift installed, Noah can get up and down to his bedroom safely, avoiding many of the falls which first signaled the impending difficulties. The new house also has room for him to use his new power wheelchair, part of the proactive strategy of his parents, Meghan and Tom, to stay ahead of the progression of the disease.
When Noah was diagnosed with LGMD2I at five years old, his parents educated themselves rapidly on therapies and treatment options. The decision to start Noah on corticosteroids was not easy, but thus far has helped give him back a little of the umph, allowing him to continue doing things he loves like playing with his two dogs and going fishing with his father. Noah and his family look ahead with hope for better treatments to arrive in the future that can ultimately halt or reverse the disease’s progression.
I want my struggle, my life, to be a conversation.
Ayla | Living with Limb-Girdle Muscular Dystrophy Type 2I
More Information
![]()
With astounding wit and exuberance Ayla is a young woman with a sharp mind who has gained untimely wisdom from her experiences with a rare genetic condition. She lives with limb-girdle dystrophy type 2I (LGMD21), a disease that has progressively impaired her physical abilities, but has only sharpened her mind. Diagnosed at 11 years old, the disease was once invisible to her peers, but slowly, and with self-compassion, Ayla learned to navigate the world as a young disabled woman.
With a keen sense of self, and an ever-expanding perspective, she has gained wisdom on how to negotiate the nuances and complexities surrounding her disease—both physiological and societal. Her relationship with her body as well as to those around her is anything but simple, and requires near-constant work. “People with disabilities are good problem-solvers,” she says. “We get used to navigating things each day.”
Whether finding solutions to daily mobility challenges or people’s attitudes toward disability, Ayla's ability to transcend difference, find common ground, and provide support to others is a gift to those around her, and a valuable tool for helping to mold a more vibrant and tolerant society.
