RICHMOND, Va. — More than 300 million people worldwide live with genetic disorders and rare diseases which can often go undiagnosed.
Identifying that disorder is a costly, time-consuming process that many families cannot afford.
A prominent American cyclist from Charlottesville and his wife are holding an event Saturday for their charity called "Olivia's Light," which hopes to help those families facing their darkest days.
Ben and Jenna King’s infant daughter Olivia died last year, from the effects of a rare genetic mutation.
On the Olivia's Light website, Jenna King points out her family had access to family members who could help with child care for their toddler son, and most important access to quality health care and testing.
She says “Olivia’s Light” will help families who are facing what amounts to a double tragedy: a child who is sick but with no means to figure out what to do next.
Ben King has competed professionally in Europe, including the Tour de France, as well as in the UCI World Championships held here in Richmond in 2015, but now in retirement faces an even bigger challenge.
"Olivia was born in July, just a sweet, beautiful baby girl," said King. "And we had no idea anything was wrong until a few hours after her birth, when she had her first life-threatening, apneic episode."
Apnea involves the sudden cessation of breathing, so Olivia was placed in the NICU at VCU, before transferring to the University of Virginia Medical Center, which is close to the Kings' home.
Olivia remained there for more than two months.
"We were able to bring her home with a diagnosis," said King. "We came to learn that UVA is one of only two hospitals in Virginia that does this specific type of test that was able to diagnose Olivia. Up to that point, the doctors were just guessing what Olivia had. And most of them were telling us that she would likely outgrow her condition and we'd able to bring her home."
The urgency of getting that diagnosis is one of the reasons the Kings wanted to start Olivia's Light. "We want to fund testing for families who are denied by their insurance company," King said. "It is viewed by the medical community as a new technology, although it's been around for 10 years, and thanks to AI, is advancing rapidly. The known gene sequences are expanding daily."
"We met a lot of the families who were there in the hospitals with us," said King. "They were coming from out of state to get the best care that they could. That diagnosis opens the door to even more support, because it's an almost impossible thing to go through."
King pointed out that with the diagnosis, a patient can qualify for Medicaid support. "We qualified for at-home nursing care, palliative care and eventually hospice. I can't imagine going through something like that without that type of support. The people coming from out of state, still have to keep working."
King had announced his retirement from professional cycling in May of last year, two months before Olivia was born. "Anticipating her birth, I opted for a more stable lifestyle than flying all over the world like I had been. And thanks to my team, who allowed me stay in America, I didn't have to go back to Europe to finish the season with a daughter in the NICU. My wife and I took turns at the NICU with her, all day, every day."
The Ride Home Roads event was first held in 2019, but then the pandemic hit, and when the Kings tried to bring it back last year, Olivia's condition led to a postponement.
So King says it's back this year with a renewed purpose: to support Olivia's Light.
And King emphasizes that while the three rides are for everyone, even non-riders will enjoy the lunch and live-and-silent auctions which all start at noon.
To register for one of the ‘Ride Home Roads’ rides, click here.
Saturday’s schedule is as follows:
The main event is Saturday, June 10, rain or shine, and the event's start/finish is at Center of the Universe Brewing Company (COTU), 11293 Air Park Rd, Ashland, VA 23005.
All three rides, of 17, 45, and 63 miles, start at 9:15 a.m. and all riders are required to wear helmets.
The after party, with a silent and live auction, begins at noon and ends at 4 p.m.
If you can't make the event on Saturday, but would like to make a donation to Olivia’s Light, click here.
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