Mother, daughter raise kidney awareness from Falmouth, Maine, to Falmouth, Mass.
FALMOUTH — You would never know from looking at 19-year-old Ben Jones, a 6-foot-3-inch college sophomore, that he was diagnosed with chronic renal disease as an infant and has lived with one kidney since he was 18 months old.
More than 15 surgeries later, a transplant is in Ben's immediate future, and his mother and sister are running a race for his cause.
Ben's family has been preparing for this moment since his first surgery just three days after his premature birth. While he has been able to live a happy, relatively healthy life, it was clear a transplant would be necessary at some point.
"He will definitely outlive his kidney," Karen said, "He never had 100 percent functionality, and right now Ben's one kidney is functioning at around 15 percent of its capacity."
Ben is lucky, however, because he has possible living donors. Both of his older siblings, Jill, 22, and Zach, 25, are undergoing donor testing. Both have the same blood type as Ben, but still must undergo genetic testing, CAT scans and ultrasounds before it can be determined if they are donor matches.
"It was never a question that I wouldn't donate," Jill said.
Karen wasn't always so sure. Siblings are most likely to be the best match for Ben because they would reduce the number of anti-rejection drugs he would need, but parents cannot force them to donate.
"I couldn't ask them, it had to be their choice," Karen said.
The children each have an advocate and had to undergo psychological testing to ensure the decision to donate was theirs.
"This is my brother, now. What if I can't have kids? If it's a perfect match he'll be getting it," Jill said, speaking about the concern that donating now eliminates the possibility if her future child needs a kidney transplant.
With more than 85,000 candidates in the U.S. on the waiting list for kidney transplants, according to the national organ transplant waiting list, Ben is extremely lucky to have his siblings as possible living donors, Karen said.
"It's amazing to know someone would just offer," she said.
While the family waits anxiously for donor match results, they have chosen to empower themselves and help Ben's cause through the 38th CIGNA Falmouth Road Race, in Falmouth, Mass., on Sunday, Aug. 15.
When Jill Jones went to the Boston marathon this spring, she was inspired by the team the Dana-Farber Cancer Institute and the Jimmy Fund, where she works, put together and wanted to get involved in something similar. She found a National Kidney Foundation team in the Falmouth Road Race and decided to take on the seven-mile challenge.
Karen decided to join Jill in the race and together they've exceeded in raising the $1,500 required for the two of them through donations from family and friends on their Facebook FirstGiving page, firstgiving.com/jillianj.
"It really means a lot that so many friends are willing to give whatever they have," Jill said.
"It's been very humbling," Karen added.
Having now reached their personal goal of $2,000, the Jones family is excited about training for the race and continuing to raise money, with all proceeds going to the National Kidney Foundation serving New England.
"We're raising the money not just for Ben, but for awareness," Jill said.
Victoria Fischman is The Forecaster news intern. She can be reached at 781-3661.