Meet Rachel Adler, 13-year-old organ donation advocate and fundraiser

By Tripp Underwood 
Rachael Adler is not the kind of person who stands around waiting for life to happen. At 13, she’s a good student who participates in many school and community service events. And despite her young age, she’s been a key speaker at events held by both The New York Alliance for Donation (NYAD) and the Northeast Kidney Foundation.But Rachael didn’t get to be the strong, active young person she is today without overcoming adversity first—and overcoming that adversity is playing a big role in helping shape the person she wants to become.

“A complete surprise”

Rachael was a very healthy and active child growing up. At just 11 years old, she was on the verge of earning her Taekwondo black belt when suddenly everything changed. She became violently sick, vomiting and feeling very drained, which doctors originally blamed on the flu. But in a week’s time, Rachael went from bad to worse, which worried her parents Vicki and Howard, who both work in the medical field. (Vicki is a registered nurse and Howard is a physician’s assistant.) Rather than take chances, the couple brought their daughter to their local Emergency Department.

“When Rachael got to the hospital, she underwent all kinds of tests, and the results were shocking,” Vicki says. “Her kidney was failing, and as a result her blood pressure had spiked. We went from thinking she had a stomach bug to talking to doctors about her hypertensive crisis and serious renal hemorrhaging. It was a complete surprise.”

Rachel began undergoing dialysis three times a week, but for her to make a total recovery would require more serious care. Two months later Rachael, Howard and Vicki found themselves at Boston Children’s Pediatric Transplant Center, where they met an entire team of experts—from kidney specialists, to surgeons; psychiatrists to social workers—who would come to play a key role in Rachael’s treatment and recovery.

“I’d spent almost ten years of my career as medical coordinator for a kidney transplant program, so I thought I knew what to expect when it came to her treatment, but I never imagined we would have access to so many different types of providers,” Vicki says. “We really felt supported by an entire team, making a tough situation a little easier to deal with.”

Eight weeks after first coming to Boston Children’s, doctors decided to remove Rachael’s failing kidneys to help control her blood pressure. She spent the next month on dialysis but then received her donor kidney and began taking those first steps on the road to recovery.

Working for a better tomorrow

These days Rachael is doing well. She’s back in school and has been inducted into the National Junior Honor Society. But after receiving her new kidney, Rachael has also developed a new sense of purpose—raising awareness and money to support organ donation and her fellow kidney patients.

Last April, she was a guest speaker at a NYAD event celebrating decisive steps New York lawmakers had made to improve the performance of their state’s Donate Life Registry.

“I realized what happened to me could happen to anyone, which inspired me to do whatever I can to increase donations,” Rachael said in her emotional and inspiring speech.  “I want to provide new hope for those people waiting for a transplant.”

More recently, Rachael was a guest of honor at the Northeast Kidney Foundation’s New York State Advocacy Day, where she spoke with lawmakers like Senator Betty Little and Assemblyman Felix Ortiz about the importance of making sure patients who have received kidney transplants have access to the right kinds of medicine, regardless of the types of insurance they have.

But there’s more to Rachael’s activism than speeches and awareness building—she’s putting her money where her mouth is, literally. This June she’ll be acting as team leader for Rachael’s Rascals, a group of friends, family, classmates and people she’s met during treatment, who will all be walking to raise funds at the Northeast Kidney Foundation’s Albany Walk/5K for Kidneys.

“She’s walking for all the people she knows at her home dialysis center who are still waiting for a kidney,” Howard says. “But she also sees it as an opportunity to honor those people who chose to donate their organs after they’ve passed. They’ve given people like our family the ultimate gift, and Rachael wants to celebrate them as well.”

So, given her interest in how transplant medicine, fundraising and lawmaking are all interrelated, is a career in Washington in Rachel’s future? Not likely, according to Vicki and Howard.

“She’s decided that she wants to be a nephrologist when she’s older,” Vicki says. “She’s been inspired by the doctors she’s met at Boston Children’s, and this is her way of paying it forward. It’s amazing how far she’s come, and I can’t wait to see what her future holds.”

“As far as we’re concerned, Rachael can do anything she wants to put her mind to,” Howard adds. “We’ll support her 100 percent and are so happy to have the chance to watch her grow and achieve her dreams.”