Lexi Del Toro, 17, a top water polo player at Laguna Beach High School, spent spring break surfing in Mexico as well as taking the ACT, a college entrance exam.
Even so, she’s no typical teenager. Two years ago, she confronted her own mortality, learning she is afflicted with incurable kidney disease, the same disorder that killed her grandfather. It will not kill her, according to her doctors. Lexi can take medication, but faces a lifetime of managing her illness.
Instead of feeling sorry for herself, Lexi decided that her condition would make her a stronger person.
Today, Lexi’s goal is to raise awareness about a disease she now knows intimately and to explain to youngsters like herself that the affliction can strike them as well as the elderly, who are more typically associated with the malady.
“I got lucky that I responded well to the medication I received,” she said, “but I heard that there was no big evolution in the treatment in the last 40 years. So I thought that there was something wrong with that. That’s why I decided to get really involved in this cause; to make a difference,” she said.
She first joined the board of Kidney for Life, an organization founded by her grandmother, Susan Brotman, and her friend, Dorothy Liener, vice-president and president, respectively. The Newport Beach foundation focuses on improving patient care and supporting UCLA’s nephrology department chair, Dr. Ira Kurtz.
She decided to join the cause actively after her grandfather died of kidney disease last December. The two most common causes of kidney disease are diabetes and high blood pressure and people with a family history of any kind of kidney problem are also at risk for kidney disease, according a National Institute of Health website. Even so, Lexi’s illness is not thought to be hereditary. “He was in fact my step grandfather, so we were not blood related. But he was the person I loved the most in the world and I decided to join my grandmother’s organization,” Lexi said.
Lexi, who started playing water polo at 9, now plays for SET water polo club and the high school’s girls’ team. When they heard Lexi’s news, her teammates and especially her coach, Ethan Damato, provided some welcome guidance. “He tried to teach me to focus on the water, saying that in the water, I can clear my mind and stop worrying about my problems. It really helped to receive that kind of support,” she said.
Damato describes Lexi with admiration, unsurprised she decided to create her own support group, The Love Your Kidney Club, at the high school High School earlier this year. “Everybody that knows her knows that she is a very strong person with a tough mentality,” Damato said. “When she was diagnosed with her condition, she never skipped a beat. She is one of the strongest player of our team and I am sure that whatever she is going to do, she will make a difference,” he said.
The Love Your Kidney Club made a splash last month at the Irvine Lake Mud Run, a Kidney for Life event that Lexi thought sounded like fun. “We were one of the biggest teams with 40 people,” she said. Entry fees benefit UCLA’s kidney disease research.
While Lexi acknowledges most the of mud-run participants were teammates or family, she envisions planning other events that attract a broader base.
Kurtz, who head’s UCLA’s nephrology department, appreciates Lexi’s efforts, especially since fundraising for kidney research is harder due to the poor economy he said. “Having such a young person involved is really unusual and wonderful,” Kurtz said. “It helps with two issues; raising awareness and having people checked by a doctor because kidney diseases are silent, people cannot feel any symptoms before the kidneys are really affected. What Lexi does is really interesting,” he said.
There are many different types of kidney diseases. So many that according to Dr. Kurtz, it is even hard to put a number on it. “We can say that the most common kidney disease is diabetes,” he said, “But basically, when you have renal problems, that means that the blood filters in your kidneys stop functioning as they should,” he said.
At least 20 million Americans cope with chronic kidney disease and 20 million more are at risk, the National Kidney Foundation estimates. In 2009, the most recent statistics available, about 400,000 patients learned they require dialysis or a kidney transplant to stay alive.
Lexi, who will be a senior next year, expects the club will survive after her graduation. “My younger brother, Nolan, who is 14, is already extremely active and I hope he could be tempted by keeping the club going after I left,” Lexi said, “and maybe in the future some students will continue the group after us. That would be great and that would mean that we have reached a part of our goals,” she said.