Siblings Ben and Zach Bumgarner (Photo courtesy Beth Bumgarner, Tim and Ann Taylor)
Triathletes come in all shapes, sizes and abilities.
On Saturday, they come in pairs.
That’s when brothers Zach and Ben Bumgarner of Chesterfield compete in the Virginia Home for Boys and Girls Youth Triathlon. It’s their third time participating in the annual fundraiser.
They’re a team. Zach, age 10, will swim the 40-yard leg in the pool while he tows his 6-year-old brother in a boat; he’ll pedal the 1.5-mile biking segment of the competition with Ben in a cart; and he’ll run the mile-long final segment of the event as he pushes Ben in a jogging stroller.
Ben can walk, but tires easily and has difficulty covering long distances. He has Duchenne muscular dystrophy, a genetic disorder that progressively robs him of his muscle strength. It mostly affects boys, and there are about 20,000 new cases worldwide each year, according to parentprojectmd.org.
Pairing with his brother in this manner in the triathlon helps Ben stay active and engaged.
“He gets to compete in his own way,” says their mother, Beth Bumgarner.
Beth says that she and her husband, Kevin, have always enjoyed running. The boys and their sister, Gracie, age 8, participate in 5K runs with their parents.
Beth once competed in marathons, but knee woes led her to triathlons about five years ago. Along the way she met Beth Trebour, whose group United Athletics pairs runners and other athletes with special-needs children for road races and similar competitions.
Trebour had been competing in events with her daughter, Jenna, who has a metabolic disorder that has resulted in numerous surgeries and stints in the hospital. She felt isolated and found numerous roadblocks to Jenna competing in events, so she and family and friends established the nonprofit to pave the way for other parents to race with their special-needs children.
Even before Ben was diagnosed, Zach had seen other children volunteering with United Athletes, and had told his mom he wanted to serve, too. Ben was diagnosed later that year, and so Zach completed in his first triathlon with his brother.
That was three years ago. Ben had been developmentally delayed: He’d started walking at 22 months, and his speech was delayed, too. A pediatrician said Ben had low muscle tone, and then a neurologist observed him and noted the presence of Gower’s sign, the use of the hands and arms to “walk up” the body to help attain a standing position from a squat. It’s a telltale sign of Duchenne muscular dystrophy. Lab work confirmed their fears.
DMD has no cure. It is progressive, generally starting with weakness in the legs and pelvis and progressing from there. Most boys are in a wheelchair by age 12 or 13. Death claims them by age 25.
The Bumgarners have decided to fight. “That’s just something as a parent that you’re [not] willing to accept,” Beth says.
They’ve literally been on the run ever since, raising money for various charities in search of a cure. Through the Muscular Dystrophy Association, they’ve raised about $20,000 over three years and about $5,000 to $10,000 for other groups, Beth Bumgarner estimates.
Beth also has participated in the Boston Marathon for Run for Our Sons (which raised about $2,000 in April, with all proceeds benefiting Parent Project Muscular Dystrophy). There are no other fundraisers on the immediate horizon, though Beth says they will again participate in the MDA Muscle Walk of Richmond fundraiser next spring.
Their fight continues on all fronts. For example, the Bumgarners have sold their home and are having another built that will be more accessible to Ben.
They’re also hopeful that new medications will become available that will help their son.
For now, there’s long-term steroid therapy, but that’s no cure and comes with lots of side effects. “We’re just kind of on the steroids until there’s something better,” Beth says.
As for what to expect, progression is different in every boy.
“It’s just hard to really predict how things are going to go downhill,” she says.
Elder brother Zach, his mother says, has a big heart and loves his little brother. It’s a special bond that the family publicly celebrated at last year’s triathlon by dressing the siblings in coordinated T-shirts with a phrase that dates from the old Boys Town in Oklahoma, and later became a pop tune made popular in 1969 by the Hollies. Zach’s shirt read “He Ain’t Heavy,” and Ben’s read “He’s My Brother.” Their grandparents Ann and Tim Taylor made a touching slideshow of images from the triathlon that she set to the tune.
At an event like this, they both just get to be kids and enjoy the day. For Zach, it’s a day of pats on the back and high fives, little rewards and recognition of his generous spirit and heart.
"It’s a great event for him to shine,” says his mom.
Siblings Gracie, Ben and Zach Bumgarner on the winners' podium (Photo courtesy Beth Bumgarner, Ann and Tim Taylor)
A roundup of health and medicine news and events
- The monthly leisurely all-ages biking excursion sponsored by Breakaway RVA will be held Aug. 25. The destination, as always, is a secret, but expect an evening ride with an educational component and refreshments at the ride’s completion. Registration closes at midnight on Wednesday.
- Six-year-old Callen Tyson is battling leukemia, and his friends, families and boosters on TeamCallen want you to give blood in his honor on Tuesday, Aug. 23 at Bon Secours St. Mary’s Hospital. TeamCallen has collected 925 units of blood over the past two years since Callen was diagnosed with the blood disease. The goal is to hit the 1,000-pint mark for the team. The blood drive will be held from noon to 6 p.m. in the hospital auditorium and Room 163. A bonus: Donate blood through Aug. 31 through the American Red Cross, and you receive a $5 Amazon gift certificate. Register in advance here.
- You don’t have to be a scout to be prepared. You can learn preparedness skills and practices at PrepareAthon, to be held 11 a.m. to 4 p.m. on Saturday, Aug. 27, at the Science Museum of Virginia, 2500 W. Broad St. The free event will include a disaster preparedness workshop, and participants receive a preparedness kit valued at $45. You can also attend a rain barrel workshop, learn CPR and check out an ambulance ride simulator. Registration is required for workshops. Call 864-1400.