She once wrote that she looks “like a typical 8-year-old.” But inside Lydia Check was sick.
Lydia was tired. She was losing weight. She had blood seeping from her bowels. At first she was treated for ulcerative colitis. She continued with monthly blood screenings to monitor her chemistry panel and in August of 2015 the screenings showed something wasn’t quite right with her kidneys. She was admitted to Riley Hospital for Children under the care of pediatric nephrologist Dr. Corinna Nailescu.
She spent Labor Day Weekend flat on her back to prevent internal bleeding. A biopsy was performed and the next three days she was administered steroids. Still there was no improvement – only the side effects that included weight gain, puffiness in her face, and emotional highs and lows. By August of 2018, routine blood work showed more decline in her kidney function. Genetic testing results determined the Lydia’s kidney disease was Nephronophthisis, an inherited autosomal recessive disorder, rare but one of the most common genetic causes of childhood kidney disease.
Lydia began dialysis three days a week for four hours - all the while knowing she would one day need a new kidney.
“She was wearing down quick over the summer leading up to her kidney failure. Then we had to face dialysis which was a drain on the whole family not just her,” said her mother Paula Check. Lydia is the only child of Paula and her husband David, of Fishers. “We definitely all went through this together, the rollercoaster of feelings, emotions and exhaustion,” said her mom.
Along with the emotional strain came the financial challenges. So the family decided to partner with the Children’s Organ Transplant Association (COTA). The organization helps children and young adults who need life-saving transplants by providing fundraising assistance and family support. According to COTA’s website it is the nation’s only fundraising organization solely dedicated to raising life-saving dollars to assist children and young adults in need. Among the fundraisers to assist Lydia were swimming outings hosted at the Goldfish School, outdoor movie nights, fashion shows, silent auctions, and a Superhero 5k run.
On September 1, 2018, Lydia received a kidney transplant. At a recent check up she Lydia wore a gray t-shirt with a pink Superhero “S” on the front. And there was a smile on her face. It was a look that is more typical of this little girl’s personality said her mom.
“Prior to her transplant surgery she was sick every day, vomiting, diarrhea, tired. She started to seem like she was losing her self-confidence a bit. But now this life-saving transplant surgery has given her new life,” said Paula Check. Since surgery, two teachers have come to the house to help Lydia keep up with schoolwork. At the advice of doctors, her parents have opted to protect her from extra germs during recovery, and she is more than ready to return to her third grade classroom at Fall Creek Elementary.
She was recently evaluated and approved to start the New Year back in the classroom.
“She has touched so many lives. It’s like she has some magic inside that we can’t explain,” said Paula Check. “She has something that is going to take her far and I can’t wait to see. She has a heart bigger than the ocean and no matter how she is feeling or what she is going through she always takes a moment to ask others how their day was or how they are doing.”
On December 10, Lydia reached another milestone. She turned 9. And with a new lease on life, she has a bucket list waiting to be explored. That list includes: A Disney Cruise, seeing the Eiffel Tower in Paris, meeting Taylor Swift, and having tea with the Queen of England.
In the meantime, like most third-graders, she enjoys singing, dancing, pretending she is a Super Hero, cheerleading, and visiting with Disney princesses.
“She has handled the stress of this better than most adults I know,” said Paula Check. “She is strong and brave; she is a soldier. She says it is because she has love, hope and faith.”
-- By T.J. Banes, Journalist, IU Health.
Reach Banes via email email@example.com.