Remembering Julia Kain

Julia Kain in a family portrait 2012. [Photo courtesy Kain family]

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Posted June 19, 2024 | By Carole Savage Hagans, Correspondent

Julia Kain lived a special, faith-filled life, and in her 24 years she was known by family and friends as someone who was caring and compassionate with a great sense of humor. And she was loving. She loved animals and caring for them, she loved her sister and niece and nephew, she loved her parents, and she loved her friends, often spending time with them in church and other youth groups.

Julia, who died on June 3, began her faith journey early, according to her mother, Tonya Kain, who noted Julia was “saved and baptized” sometime around the age of 7 to 9. She took this part of her life seriously and would even approach others and ask if they were Christ followers. That put her parents in a tough spot sometimes, Tonya said as she laughed. “Sometimes we didn’t even know the people very well.”

Julia also had a rare and progressive genetic condition called Niemann-Pick Type C. Tonya and Julia’s father, Jason, explained that the brain makes cholesterol, and a protein helps remove it. Those with Niemann-Pick Type C are missing that protein so the cholesterol builds and essentially keeps the brain from communicating with the rest of the body.

Tonya always knew that something wasn’t quite normal with Julia’s progress, beginning with her earliest years.

“When she was a baby, Julia didn’t walk until she was 13 months, and she often fell,” she said, adding that, at the age of 4, Julia would roll on the floor but when she sat back up, her eyes would roll back and not return to their regular position immediately.

Later, when Julia entered kindergarten, she couldn’t keep up with other students her age and her parents had her tested to see if she needed help through exceptional student education.

“We had her tested for ESE but she couldn’t qualify for that, but she still couldn’t keep up,” she said, noting that through a series of tests they could see Julia’s IQ was dropping. Tonya explained that she was told early on by doctors not to worry about these different issues, but Julia was her second child, and she knew the milestones were way off. So, she persisted in finding an answer. Finally, when Julia was 11, that answer was discovered by genetic testing, which revealed the Niemann-Pick Type C.

Then began the travel for medical help. To Rochester, Minnesota, to consult with a specialist. To Bethesda, Maryland, for trial treatments, which finally started in 2013. There were two brain surgeries and 158 lumbar injections. Four years in, UF Health Shands in Gainesville was able to offer the treatments, so the commute was shortened. But there were other roadblocks and challenges—FDA halts to the type of treatments, access again in Chicago and renewed and frequent travel, risks and the reality of pneumonia. After years of the grueling process, the progress was no longer there and the family chose to stop and live the best life they could together.

Despite everything, Julia always remained active. She was part of the agriculture program at Fort King Middle School while her sister Rebecka was part of the class and program at Vanguard High School. They both enthusiastically participated in the annual Southeastern Youth Fair. Julia loved the youth fair so much that she volunteered in the office to help out. She showed five pigs through the years, with family friends coming together one year and pooling their money to purchase her pig for $57 a pound. That money went to the trust to pay for Julia’s expenses. She kept up her schooling, graduating from Vanguard High School in 2018.

Julia had an interest in photography and videography and as a pre-teen would walk around with her camera, narrating as she filmed and including whoever was in the room as part of her video. She would also turn the camera around to show her own face and introduce herself. It was part of her humor and she shared it freely.

“She was funny and sarcastic and a Christ follower,” Tonya said in describing her daughter. “I mean she loved Jesus, that was such a big part of her.” When Julia attended Wednesday night services at Church of the Springs, Tonya described her as, “a hands in the air type of girl.” Even after she aged out of the middle and high school groups, she would work in the church’s cafe and then worship.

Julia seemed to understand early on that her life expectancy might not be a long one, and when she was first diagnosed, she asked her mother if she was going to die.

“I couldn’t even answer her at first,” Tonya said, “but after I took a break and got back to her, I told her if she was asking if other kids had died from it, I told her yes, but if she was asking about if she was going to die, only God knows that. You can have a car accident and die, we don’t know what the future is.”

The realization of Julia’s medical situation created an even closer relationship between the family members, and they prioritized being together. They spent time fishing, playing games, watching movies and playing basketball, which Julia particularly enjoyed. They also enjoyed taking a vacation each year or even two or three if they could. When Rebecka later had her own children, Julia was always interested in being with her niece and nephew.

“If you let her hold a baby, she wouldn’t turn it down,” Tonya said, laughing, noting that whenever Rebecka and the children visited, Julia wanted to spend time with them. “She loved those babies,” Tonya said.

After high school, Julia spent time at home with her mother, but within a couple of years she wanted to find new things to do. The family learned about The Circle 24/7, a local nonprofit group that provides programs focusing on the body, mind and spirit for adults with special needs. Tonya said Julia looked forward to spending three days a week with the other girls, watching movies, engaging in Bible study, going on field trips, and participating in a card ministry among other activities.

“Julia was the youngest girl,” Tonya said, “and it was an amazing thing with us as it was an outlet with friends for her.”

On The Circle 24/7 Facebook page, a message about Julia was posted two days after she died, stating, “On June 3^rd, our sweet Julia went home to our Lord and Savior. There are no words to describe how much she is missed & loved. She brought joy, love and spunk to all who were blessed to know her. Julia will always be in our hearts and her family will always be part of The Circle family.”

The Kain family is grateful for all of the support they’ve received, and Julia was as well, but true to her spirit, she would think of others.  “When people would give her gift cards,” Tonya said, “she would go out and shop for someone else.”

A celebration of life is scheduled for Saturday, June 22, and in honor of Julia’s love of bold, tie-dyed colors, guests are asked to wear their own bright colors. Mismatched socks are also welcome, as Julia never matched her socks, whether on purpose or not. It was something she seemed to find amusing, and made others laugh.

“She had the sweetest heart of anybody I’ve ever met,” Tonya said, and Jason quickly agreed. “She loved almost everybody and thought of other people before herself.”

The Celebration of Life for Julia is at 2 p.m. Saturday, June 22, at Central Christian Church, 3010 NE 14 St., Ocala. In lieu of flowers, donations may be made to The Circle 24/7, P.O. Box 632, Sparr, FL 32192, or the Catch A Dream Foundation (catchadream.org), both of which meant a lot to Julia.