Help Maddie Get Her New Kidney: How To Register As A Living Kidney Donor

WILDOMAR, CA — A 7-year-old Wildomar girl, Maddie Chapman, is in kidney failure, and actively waiting for a kidney transplant. In the meantime, her parents will take turns taking her 70 miles to the Los Angeles for three-times a week dialysis.

It's been a long four days getting her new dialysis catheter inserted. Ultimately, it will make the dialysis more tolerable, but in the short term, doctors dealt with issues related to the procedure, requiring a stay in the ICU at Kaiser Hospital in Los Angeles. By Monday, Maddie's mother, Samantha, told Patch she was tolerating the initial slow dialysis well.

Meanwhile, her parents, family, nephrologists, as well as a plethora of supporters from Charity for Charity's Stars of the Valley, are doing everything they can to help that happen with a statewide campaign to find Maddie, a second grader at Ronald Regan Elementary School in Wildomar, a living kidney donor.

"It's been a rough, rocky road for Maddie," her mother, Samantha Wagner told Patch on a recent rainy Thursday. "But we face it, head on."

Both Maddie and her brother Michael, 4, were born with a rare genetic disorder with the complex name: WDR #19 Ciliopathy with biliary cirrhosis. This rare disorder requires two parents, both carrying the same mutated gene, and it's among the rarer of rare genetic ciliopathies, according to PubMed.com.

While Maddie's symptoms went undiagnosed for several months, before the need for a liver transplant became apparent, Samantha and Josh noticed similarities with Michael which encouraged his faster diagnosis.

"(When Michael started showing symptoms,) we submitted (DNA) together to see if it was a genetic disorder, and learned we'd won some horrible lottery. It's been wild," she said. There is no cure for the disorder, and treatment focuses on managing their symptoms from medication and monitoring of the liver and kidney, to liver and kidney transplant.

Both children had successful liver transplants as infants, and their health is steadfastly monitored. But with the transplant medication comes kidney issues. While Maddie is in renal failure, Michael is doing well, Samantha said.

Monitoring will forever be part of their lives due to the genetic disorder, but with proper management of symptoms, they both have positive prognosis.

Back to reality after a night of celebration and granted wishes.

The family is fresh on the heels of a night of overwhelming love and support at the Charity for Charity annual 'Stars of the Valley' wish-granting gala.

There, Maddie and her family were showered with generosity as beneficiaries, all gifts aimed at a family who loves to travel. "They love hotels, and being away from home," she says. They'll be off to Colorado, and Monterey Bay Aquarium, when Maddie is better.

During the event, they were photographed and supported and granted trips of a lifetime. For now, it's back to reality from princess dresses, hair and makeup professionals, and fundraising support for the hours and days of lost work, and travel required for the trek to Los Angeles.

While we talked, Samantha was feeding her daughter, Maddie and son, lunch on a rainy Thursday. In the background, they kids were laughing, happy, as Samantha was packing to take Maddie to the hospital to prepare for regular dialysis treatments. All will be performed at Children's Hospital Los Angeles, three times a week until she gets a new kidney.

There is no facility nearer to their Wildomar home is capable of doing this type of dialysis on a child, according to the family. With the back and forth hospital visits comes added physical, emotional and financial stress. After considerable thought, they established a GoFundMe to help with the financial strain she knew was coming: first, the surgery to prepare for dialysis, then the multiple, weekly treatments.

"They're going to start dialysis as soon as they implant her catheter. Then, we'll be driving to Los Angeles, to Children's Hospital Los Angeles, for dialysis three days a week," Samantha said. She's been back and forth to the hospital many times in her life, almost too many to count.

As she discusses what's coming, Samantha sounds focused and confident. Blink and you might miss any sign of anxiety, or nervousness, all well hidden behind her tough-as-nails facade. "It's a learned trait, to be this tough. No one is born to be like this," she tells us.

Both Samantha and her husband Josh work together running their home and loving on their kids. She's a nurse at Rancho Springs Hospital in Murrieta and he works for a local automotive parts store in Lake Elsinore.

"He is the most supportive medical dad. He helps me with their medicine, their appointments, the driving, and he holds down the fort when I'm in the hospital with Maddie."

Weekly Dialysis Plans While They Search For Maddie's Kidney

"I was going to be my son's living liver donor," Samantha said, talking of his need when he was a baby. She knows that whoever makes that decision is not doing it lightly.

Becoming a living donor is a huge process, and not one to take lightly, she said. "When you go through the living donor search, they also do a psychiatric evaluation. See if you understand how you would feel if the transplant is, or isn't successful."

When Maddie's kidneys first began to fail, doctors at CHLA and USC Keck Medical Center, began looking for a donor. The family has since fast tracked their search for a living donor, giving Maddie the best chance for transplant.

"It only takes one person to make the match," Samantha said. Most importantly, a living kidney donor needs to initiate the process.

There's a detailed screening form, and you can choose to donate to a specific person, should you be a perfect match: You must be type O+ or O-, with no problems like high blood pressure, no autoimmune disorders, and financially able to carry the weight of recovery.

"A living donor would need to be off work for at least four weeks for recovery," she said.

The family has exhausted their ability to be matched, and now donors are being sought across the state. "Maddie is actively listed as in need of a donor, living or deceased," she said. "A living donor is the best option for everyone."

Email Samantha Wagner for more details if you have the heart for kidney donation, and meet the above criteria.

If you don't, the family set up a GoFundMe fundraiser while they are going through the hardships of managing weekly dialysis in another city.

Southwest Riverside County "Stars" Seeking Help Finding Maddie Her Kidney

According to the Charity for Charity Stars of the Valley team, the family is truly inspiring in the way they persevere through every challenge placed before them.

"Mom, Sam, is strength personified, and dad, Josh, is quiet and steady," Charity Prestifilippo told Patch. "They work tirelessly to give their children as 'normal' of a childhood as possible, despite the weight they carry. These two siblings are nothing but loving, kind, and gentle — proof that hardship does not define the size of your heart."