Written by Amanda Coers – When family and friends talk about Aidyn Johnston, they remember his beautiful smile. In the eight years of his life, Aidyn touched so many hearts. Aidyn passed away in his parents arms on June 17, 2018. He was very loved and will be missed.

Aidyn’s health journey was a struggle from the time he was just three months old. As an infant, a life-threatening RSV infection kept him in the ICU for a month. Later, at seven months old, he was diagnosed with infantile spasms, an epileptic disorder that can cause cognitive damage in young children. The seizures left him unable to eat, and he was fitted with a feeding tube. 

When he was four years old, doctors discovered Aidyn had nephronophthisis, a debilitating kidney disease. He also had an enlarged heart, a side effect from the steroids needed to help control the seizures. 

But Aidyn was so much more than the sum of his diagnosis.

He was very loving, playful, and at times, even a bit mischievous. Aidyn enjoyed disrupting the carefully folded laundry his grandmother had sorted. 

“He would just have it destroyed,” his grandmother, Trina Whinery said, remembering and laughing. 

Lerin Peña worked with Aidyn in his Life Skills class at Woodland Heights Elementary. She too remembers his boyish ways of getting into everything. 

“He had the sweetest, most purest smile that was infectious to everyone,” Lerin said. “When he was out of his wheelchair he could crawl so fast if he saw something he wanted and he would turn and look at you and smile so big with a sweet mischievous look. Everyone who had the honor to know him are better people because of him.”

Caregiver and family friend Kendra Putman says Aidyn was very special. Kendra’s husband, Andrew, was one of Aidyn’s nurses. 

“As rare as the diagnosis that Aidyn had, that’s how rare Aidyn was,” Kendra said. “He was like the closest thing to Heaven’s Light that we will ever see.”

“He had a very contagious smile, he’s full of life,” his teacher Melissa Edwards said. “He was always willing to hug and love. He was all boy in his way. He got around, he was fast, and sneaky. He was one of those students you had to always watch out for, to see what he was doing. He was very funny and very smart. He was our cuddle bug. There are no words, you just have all those memories. We cherished every minute and we were glad for every day we had with him.”

“He definitely left a mark,” said Cassie Millican, one of his former teachers at Woodland Heights. “He was the happiest kid, you would never know that he had any issues. He was the biggest prankster, just the most precious thing. He loved his classmates around him. The first thing in the morning he would get off the bus, kicking his feet, smiling and ready to be there.”

Aidyn loved his twin sister, Anaya, and she was always playing with him, reading to him. Even at McDonald’s, the fast food utopia for children, Anaya would ask for a boy’s toy in her Happy Meal, to give to her twin brother, knowing that he couldn’t eat with her. 

Aidyn loved playing in water. The last time his family was able to take him on an outing, they brought him to the splash pads at Alcorn Park, along with his teacher. 

“He had a blast, he loved it,” his mother, Khrystian said.

“Every thing he’s been up against, the infantile spasms, the heart issues, and the nephronophtisis… it’s all just been the worst. But it didn’t matter to Aidyn. He was always so happy,” his mother said. “No matter how sick he was, he always smiled and touch our face, like he was trying to comfort us.” 

In January 2017, Aidyn underwent open heart surgery which led to a month and a half stay in Texas Children’s hospital and six weeks of kidney dialysis. Due to his many health complications, Aidyn was not considered a viable kidney transplant candidate. Near the end of February of this year, his family needed to make the decision to transition to hospice care at home.

“We thought at that point we were going to lose him,” his mother said. She and her husband, Josh, decided to wait until spring break to stop the dialysis. Aidyn, it seemed, had other plans. 

“He’s a turkey,” she laughed. “His kidneys decided to start working the day we were going to stop dialysis. He said no, I’m not ready just yet.” 

His grandmother, Trina Whinery, credits prayer warriors in Aidyn’s life.

“Those prayers worked for Aidyn, and I believe Aidyn knew we were praying for him and he believed in those prayers,” Trina said. 

Aidyn fought to stay with his family, giving them precious time to say goodbye. However, walking pneumonia and stomach flu combined were too much for his already low defenses. In his last few days, Aidyn slept most of the time, at home, surrounded by the people he loved. A few nights before he passed away, Aidyn woke up. 

“He had been sleeping all the time, he was just so tired,” his mother said. She was so happy to see him up. “He was him, he was tired, but he was him.” 

Aidyn was able to play with his 10 month old younger brother, Theodore, as he had done so many times before.

“We put his brother on the bed and he grabbed him and held him. His sister came and they played together and talked,” Aidyn’s mom said. “It was the greatest blessing in the whole world to see him be happy.” 

At the end, his father climbed into bed with him and held him. Aidyn was content, breathing for a little while as he slept, held by his parents. And then he was gone. 

“I have a lot of people that ask me why I’m not angry at God,” his mother said. “It’s my belief that Aidyn was given to me for a reason. I wasn’t there for him, he was there for me. He taught me so much, to be so grateful and so appreciative of everything. I believe that these are God’s children, they’re not our children. We are so blessed by God to be entrusted with His children, for whatever length that we have them. God saw fit to give me eight and a half beautiful years with my son. I am so thankful.”

There will be a memorial service for Aidyn on Thursday, June 21st, at Abundant Life Church at 5 p.m. Because he loved dogs, his family would like to ask donations in Aidyn’s name be made to the Corinne T. Smith Animal Shelter in lieu of flowers.  

Friends of Aidyn’s family have coordinated a GoFundMe account to assist his parents as they cope with the loss of their son. You can donate online here: gofundme.com/transitioning-help-for-the-lewiss