Transplant News Sharing // News from Source www.salemnews.com
BEVERLY — Nikolas Hourican was 3 years old, dressed as a monkey on Halloween night, when his parents first noticed something wasn’t quite right.
“My husband was carrying him in his arms and I was right beside them and he kept saying, ‘Mommy, mommy, where are you?,'” Renee Hourican recalled.
That small sign proved to be the start of a harrowing journey for Nikolas and his family. He was eventually diagnosed not only with a degenerative eye condition but also with stage 4 kidney disease, a devastating double whammy that doctors eventually attributed to a rare genetic disorder.
Now, at age 13, Nikolas is about to get help in the form of a kidney transplant. And his donor is someone who understands the heartbreak caused by a rare childhood illness.
Kamie Fessenden, whose 9-year-old daughter, Riley, died of a rare form of cancer in 2016, has volunteered to donate one of her kidneys to Nikolas. The transplant is scheduled for Nov. 5 at Boston Children’s Hospital.
“It’s just a selfless act of kindness,” Renee Hourican said. “I don’t even have the words. I’m just blown away. She is just the most amazing person, inside and out.”
Nikolas’ condition is so rare that it is one of only 12 such cases in the world and doesn’t have a name, doctors have told the family. A research team at Children’s Hospital discovered the gene mutation that was causing both Nikolas’ blindness and kidney failure three years ago. Up until that point, they had no idea that his two conditions were related, said his father, Matt Hourican.
“We just thought it was bad luck,” he said.
Nikolas’ eye condition has left him legally blind. He has 10 degrees of peripheral vision, which his father describes as viewing the world through a straw. Nikolas also has night blindness, which renders him virtually sightless in low light and darkness.
His failing kidneys, meanwhile, no longer produce red blood cells, requiring painful injections every two weeks that deprive him of energy and stamina.
Through it all, Nikolas, who has learned to read by Braille, is an honor roll student at Beverly Middle School. He loves to ride his bike, Jet Ski and play guitar. He taught himself how to code his own video games.
“He lives life to the fullest,” his mother said. “There’s nothing that can stop him.”
When doctors decided it was time for a kidney transplant, nearly 30 people came forward as potential donors, including the Houricans’ letter carrier. Kamie Fessenden said both she and her husband, Todd, who grew up with Matt Hourican in Beverly, put their names on the list as soon as they learned they had the same blood type as Nikolas.
Riley, their daughter, had inspired the entire community with her battle with a rare form of brain cancer. Today the Riley Rocks Memorial Foundation funds scholarships and raises awareness about pediatric cancer. Matt Hourican, moved by the determination of his friend’s daughter, even has a ‘Riley Rocks’ tattoo on his arm.
“Obviously I know what it’s like to have a child with a life-threatening illness,” Kamie Fessenden said. “If there was anything I could do to help, it was a no-brainer. I know what Matt and Renee are going through, that they would do anything to help their child.”
Fessenden said she originally wanted to remain anonymous because she wants the focus to be on Nikolas.
“This isn’t about me,” she said. “It is all about Nikolas and helping him to get well.”
When the Fessendens learned that Kamie had been selected as the best match for the transplant, they went over to the Houricans’ house and surprised Nikolas with a gift — a Christmas ornament showing one snowman handing a kidney to another snowman, with the title “Kidney buddies for life.”
Nikolas didn’t say much. But his family, which includes his 10-year-old sister, Kali, knew he was excited when he hugged his dog and said, “Dixie, I have a donor!”
Renee Hourican said a new kidney will give Nikolas the stamina of a regular teenager and improve his quality of life. As for his vision, the family is hoping that advances in technology will prevent him from going blind.
In an interview through FaceTime, Nikolas said he is nervous about the transplant, but “excited to feel better.”
Asked what message he’d like people to get out of his ordeal, Nikolas said, “To never give up hope.”
Donations to help with Nikolas’ medical expenses can be made by going to gofundme.com and searching for “A Hope for Nikolas.”
Staff writer Paul Leighton can be reached at 978-338-2535, by email at [email protected], or on Twitter at @heardinbeverly.
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