by Cherise Forbes, republished with permission from the Feb. 8 Manchester Journal

DORSET — Last year, Sierra Seidler was living the life of an average teenager. Today, Sierra and her family are desperately seeking a kidney donor to save her life. 

“It’s urgent, she needs a kidney now,” said family friend Jen Soderberg Straub. “They told her there was around four months [to find a new kidney] back in October.”

Straub first met Sierra and her family in her role as founder and president of the Dorset Equine Rescue, where Sierra and her mother Megan White, both of Shrewsbury, have volunteered for years. 

Though many people have come forward to be screened as donors, Straub said, none have been a match. 

“We met with her team on Monday and it sounds like she’s had a really great turnout so far for people signing up to be screened,” said White. “ I think they say one in 10 actually pass screening, so it does take quite a few people to sign up to find that perfect match.”

Sierra has type O blood so she will need a donor who is either O positive or O negative, and her transplant team is ready to start the deep screening process for any potential matches who are interested in being a donor.

Interested donors should consult Dartmouth’s guidelines on becoming a living kidney donor.

“We’re hoping that someone will come forward and they’ll be a match,” Straub said.

Sierra’s medical saga began last year, when her parents sought help for worsening symptoms like fatigue – benign enough to mask a larger problem. 

“Before we knew what was going on, we thought it was just teenage stuff,” White explained. “She had just really struggled to have joy or energy for things.” 

Sierra was brought to Rutland Regional Medical Center in October to investigate her symptoms, which had persisted for more than a year at this point. Though this was meant to be a fairly straightforward appointment, Sierra was soon being airlifted to Dartmouth-Hitchcock Medical Center. 

After nine days in the hospital and myriad tests, doctors determined that Sierra was suffering from primary focal segmental glomerulosclerosis (FSGS) kidney disease. A biopsy showed that the disease had already permanently damaged 90 percent of her kidneys.

“In the beginning we all thought she’d be fine,” Straub said. “That they’ll find a kidney.”

Unique medical circumstances left Sierra’s family unable to donate, however, and many long days have passed for Sierra and her family as they await a suitable kidney. Though Sierra’s team urges anyone and everyone to get screened if they can, the quality of the organ they find will have an impact on her quality of life in the future. 

“She could be looking at four transplants during her lifetime because she’s so young,” Straub said. “At this point, she just needs a kidney.”

Sierra is now undergoing dialysis three to four times a week at Dartmouth, approximately three hours round-trip from their home in Shrewsbury. While the family had hoped to find a treatment center closer to their home, most facilities are not equipped for such a young patient according to White.

“We had a really, really long day on Monday,” she explained. “Our dialysis schedule has us up at four in the morning and out the door at about five so that we are hooked up at Dartmouth a little before seven. Then she’s hooked into her machine for about three hours.”

Sierra has had to see a number of specialists for medical issues caused by kidney failure, and recently had to receive a blood transfusion. Though transfusions can complicate the transplant process, White said that Sierra had grown so malaised from a shortage of hemoglobin that the procedure became necessary.

“It’s really hard to see your child who has always been so healthy and so strong struggle daily,” White said. “She doesn’t cry all too much but she’s just in so much pain and it’s hard to see her experience that.”

Though Sierra is often fatigued from her illness and treatments, White says that she has found joys in artistic endeavors like sketching, writing, and crafting. Through these activities, the pair have found a silver lining in the form of their deepening bond. 

“We’ve always been close, but this has brought us so much closer,” she said. “We paint, we make jewelry, everything. It’s been really fun to do it together.”

Though White previously worked in property maintenance and offered horse riding lessons, taking care of her daughter has become a full time job. She has been able to take up part time work as administrative assistant for the Shrewsbury Select Board, totaling six to eight hours per week. 

“I can do a lot of stuff from home which is great,” she explained. “It has been something to keep me positive and bring in some sort of income. It’s very minimal but it’s something.”

Those who are ineligible as organ donors can also support Sierra through a GoFundMe organized by Straub to support living and travel expenses, doctors appointments, and specialized food among other needs. So far, Straub has raised just over $20,000 – about a quarter of her goal. 

“We have so many amazing people behind us, thinking of us and rooting for us,” White said. “It keeps us positive and we just feel wrapped in our community.”

“We’re hanging in there,” she concluded. “Now we’re anxious for the next step, which is for her to get the kidney she needs to feel better.”

Sierra Seidler, a 14-year-old from Shrewsbury, is seeking a kidney donor to save her life. Her community at the Dorset Equine Rescue, where Sierra and her mom Megan have volunteered for years, is leading an effort to fundraise and find a match.