Sammy's Run founders take a final lap but remain resolute in their cause

For 15 years, Rich Lomas has pushed his disabled son Sammy in a racing wheelchair through road races of 5,000 and 10,000 meters. During each contest, Rich gets to within 20 yards of the finish line and stops. He then lifts Sammy out of his chair and father helps son walk across the line. Susan Lomas — Rich’s wife, Sammy’s mother — is waiting to greet them. “Everybody’s cheering and Sam just hears it all and smiles,” Rich Lomas says. “He loves the attention.”

Rich and Sammy Lomas will experience their ritual again — perhaps for the last time — on May 25 in the eighth Sammy’s Run, a 5K that takes place near Main Street at Lakewood Ranch, followed by a social gathering there. During the post-race festivities, medals will be awarded and one challenged athlete will be presented with an $8,000 wheelchair bike, paid for by proceeds from the event.

Sammy Lomas was born with Phelan-McDermid Syndrome, a rare genetic disorder that has devastating effects on many critical functions in a person’s body. He has never had the capacity to speak. Now 30, he has poor vision. He suffers from scoliosis and can only walk short distances with assistance. He’s tube fed several times a day. Most troubling of all for his parents, Sammy developed epilepsy in his teens and it has grown worse over the years, resulting in terrifying grand mal seizures as often as once a month.

Caring for their son is a full-time job for Susan. Rich, 57, works at home as a computer programmer and spends most of his remaining hours tending to Sammy’s needs. “Sleeping is not much of a thing for us,” he says, because the husband-and-wife team must constantly monitor their son’s condition, especially with regard to seizures.

Rich and Susan Lomas don’t do date nights. Every now and then, they enlist the help of a grad-student friend, who comes over and watches the home cameras while the couple slips out for a quick bite. Otherwise, the highlight of their day is taking Sammy on a three-mile bike ride around Lake Uihlein near their home in the Edgewater neighborhood of Lakewood Ranch. Sammy rides in a wheelchair bike. “We show him his sneakers and he knows he’s going,” Susan said. “We can tell he loves it.”

Image courtesy of Susan Lomas

Rich and Susan Lomas, both Americans, met while working at the same company in Vienna, Austria. They had been together less than a year when Susan’s mother was diagnosed with a terminal illness and the couple returned to the States to be with her. Shortly after her mother’s death, Susan discovered she was pregnant. “Just by chance, I had an amniocentesis, which showed a genetic deletion,” she recounts.

The missing genetic material, known clinically as Deletion 22q13, was so rare that the couple did not know what to expect when their child was born. They met with a geneticist in Miami. “She just laid it out to us straight: ‘Your child will have retardation,’” Rich remembered. “I don’t think I heard much after that.” 

The couple never discussed terminating the pregnancy, Rich says. Sammy was born two months premature, weighing two pounds, four ounces, fighting for his life. Meanwhile Susan was suffering from preeclampsia, dangerously high blood pressure. “I almost lost both of them at the same time,” Rich says ruefully. 

Sammy spent five months in the neonatal intensive care unit at Arnold Palmer Hospital For Children in Orlando, while Susan stayed in a nearby home for moms. Rich continued to travel for his job as a computer programmer, joining them on the weekends. It’s been estimated that Sammy Lomas was the eighth confirmed case of Deletion 22q13, later named Phelan-McDermid Syndrome after the two scientists who discovered it.

The family settled in Venice in 1999. Three years later, Susan, who had not reentered the workforce after Sammy’s birth, co-founded the Phelan-McDermid Foundation, a patient advocacy group that helped bring together families affected by the syndrome. The worldwide nonprofit has grown and is going strong. It helps spread the latest information about the disease, but its primary endeavor is the PMSF Family Conference held every other year. (This year’s gathering is scheduled for July 17-20 in Bloomington, Minnesota.) Susan remains involved in the group — when time allows.

Rich Lomas was a track and cross-country star in high school in west Texas. But he stopped running when Sammy entered their lives, and fell out of shape. In the mid-2000s, he traveled to Tampa to see Dick Hoyt push his son Rick in a road race. The tandem had become celebrities in the racing community due to heart-wrenching media coverage of their competing in triathlons. Watching the Hoyts lit a fire in Rich Lomas’s belly. He started running again, lost 35 pounds, and entered his first push race with Sammy in 2007. “From the very first time, he’s what makes my heart go,” Rich says. “All the inspiration I need, I get from him.”

Sammy attended Oak Park School for kids with special needs in Sarasota. Rich and Susan hatched the idea of starting a 5K race in their son’s honor, and got together with school administrators, who jumped at it. Sammy’s Run, held on and around campus, was a huge success, drawing up to 900 runners and 20 wheelchair teams. Sammy’s worsening health problems caused the couple to pause the race after the 2013 event.

With encouragement from sponsors and enthusiasts, the Lomas’s planned to start it up again in 2020 in their new environs of Lakewood Ranch — but Covid happened. They relaunched Sammy’s Run in 2022. Rapid development and increased vehicle traffic have made finding race courses in Lakewood Ranch increasingly difficult. Sammy’s Run won’t be able to use this year’s course again, Rich says. He’s not sure where — or even if — he and Susan will move it to. So the future of Sammy’s Run is very much in doubt. “But we don’t want to ever say never,” Rich says. 

One suspects he might find that fire in his belly again.