A chance meeting and “divine intervention” delivered hope and friendship to two Blandon families and better health for a little girl.
Fleetwood School District substitute teacher Cindy Santos first met Katelynn Ernst, 5, while substituting in her kindergarten class Sept. 12. This meeting would later lead to them being joined forever, by a kidney donation.
Katelynn suffers from hemolytic uremic syndrome. According to the Mayo Clinic, http://www.mayoclinic.org, “HUS is a condition that results from the abnormal premature destruction of red blood cells. ... damaged red blood cells start to clog the filtering system in the kidneys, which may eventually cause life-threatening kidney failure.”
“It’s been hard,” said Katelynn’s mother, Alicia. “It’s a hard situation because it is so rare that kids get this.”
When Katelynn was about 22 months, she developed flu-like symptoms and they took her to the doctor. The next day, Alicia found Katelynn turning blue and having seizures. She spent nine weeks on dialysis at the hospital. Doctors at first thought it was meningitis, but testing determined the cause of her illness was exposure to E. coli bacteria. However, they do not know its source.
From about age 2 to almost 5, she had about 30 percent kidney function. In July 2013, Katelynn’s kidney function was so diminished she required 10 hours a day of dialysis and took 12 medications a day, some multiple times. She needed a kidney transplant.
“We’ve had a lot of anxiety and depression,” said Alicia.
“It’s an emotional roller coaster because you don’t know what’s going to happen,” said Katelynn’s father, Chris. “Not knowing, because you are on a list for a deceased donor, so if you get a phone call, your emotions get high, they get low, you get sad, you get happy.”
“You’re scared for your child, for her future, just to have the next day,” said Alicia.
Something about Katelynn touched Cindy’s heart and she remained on her mind. She later saw Facebook posts by Katelynn’s Kidney Journey and realized it was the same Katelynn. Reading the requirements, Cindy realized she was the perfect candidate for a living organ donor.
“There was no denying this was the right thing to do,” said Cindy, who is the mother of three boys, Casey, 18; Brett, 16; and Evan, 12; and wife of Matt Santos.
Several months and many tests later, with a couple of possible donors being ruled out, the donor coordinator contacted the Ernst family the day after Thanksgiving, informing them of a donor match. They realized Cindy not only lives in their community and taught at Katelynn’s school, but lives only one mile away.
“Everything played out, like she was sent,” said Alicia. “She is an angel.”
Though denying she is an angel, Cindy said, “I do believe I was put in Katelynn’s classroom. ... It’s not coincidence, it’s definitely divine intervention.”
“We feel exactly the same way. God sent her to us,” said Alicia.
Then, on Dec. 10, just 11 days after the Ernsts received the call, Katelynn and Cindy both underwent surgery, Katelynn receiving one of Cindy’s kidneys, now fondly called “Cindy the Kidney.”
“It’s incredible to be able to do it. It’s surreal that she has one of my organs and she’s thriving on it,” said Cindy. “She looks so healthy now, she looks incredibly different.”
“She has an appetite,” said Alicia. “She has a lot more energy, too.”
“It gives her another chance at life, [away] from a machine,” said Chris.
“She can have a normal life of a kid,” said Alicia.
Katelynn is excited to be able to go swimming this summer. She wants to go to Disney World. She plays dressup, likes to draw, loves to dance and make videos with her siblings, Kayla, 12; Kameryn, 9; and Noah, 17 months. She likes to eat pizza, macaroni and cheese, and strawberries.
Her parents say Katelynn now has two birthdays to celebrate, Aug. 20 and Dec. 10, the day she received a second chance at life.
When asked what else they have gained as families, Alicia said, “Friendship.”
“Feels like we’ve known each other for years,” said Chris during an interview in the Santos home in Blandon.
Cindy said she has been humbled by people’s kindness, cards, emails and calls, mostly by people in the community. She believes their story gave people perspective on what it is to be grateful and the true meaning of the spirit of giving.
“People realized what they can do to help,” said Chris. “There are a lot of people who need a kidney. People wait years for a donor.”
They hope this showed people they also can be a living organ donor, and make a difference in someone’s life.
“This brought a community together and showed them how they can help each other,” said Cindy. “People have been touched and it has bred kindness.”
For more information, go to Katelynn’s Kidney Journey on Facebook.