NCHS graduation gives family opportunity to celebrate daughter’s life, achievement

Lexi Newton, assisted by her sister Janet Newton, receives a standing ovation at Nelson County High School’s graduation ceremony Friday night at the school gymnasium. From left, Nelson County board of education member Jeff Dickerson and board chairman Damon Jackey.


Nelson County Gazette / WBRT Radio

Friday, May 25, 2018 — For one Botland family, Friday night’s graduation ceremony at Nelson County High School was much more than a celebration to mark their daughters completing high school.

For the family of Jeremy and Jackie Newton, Friday’s ceremonies were a chance to celebrate daughter Lexi Newton’s life — a life that’s been filled with challenges, but also with tremendous joy.

A group of Lexi’s male classmates lift her wheelchair onto the stage while her sister Janet watches at left. The sisters received their diplomas during Friday’s graduation exercises at NCHS. Click to enlarge.

Lexi was born with Canavan’s disease, a rare inherited degenerative genetic disorder that causes progressive damage to nerve cells in the brain, affecting their ability to send and receive messages.

The disease has no cure and no treatment. For those who develop Canavan’s disease in childhood, the disease is eventually fatal. The majority of infants with early onset of Canavan’s only live into childhood.

The diagnosis and its grim prognosis was initially a shock to the family. Equipped with a team of support physicians, Jackie and Jeremy accepted the challenge Lexi’s care presented them.

Lexi was born premature during the 28th week of Jackie’s pregnancy. Lexi was small  — 2 lbs and 3 ounces — but otherwise she appeared to be a normal little girl when her family welcomed her on Nov. 10, 1999. Her premature arrival meant the first weeks of her life would be lived in the hospital. She was welcomed home by her family in January 2000.

But in the months to come, Jackie noticed that young Lexi was not hitting her developmental milestones. She discussed the matter with Lexi’s pediatrician, Dr. Ron Tyler. The family was referred to a specialist.

The specialist was a neurologist whose initial suspicions were confirmed by testing — Lexi had Canavan’s disease, one of a number of inherited neurological disorders in the leukodystrophies family.

Canavan’s disease is a recessive genetic trait that is most commonly found in people of Eastern European Jewish ancestry. About 1 in 40 individuals of Eastern European (Ashkenazi) Jewish ancestry are carriers.

Board chairman Damon Jackey presents Lexi Newton with her diploma. Click to enlarge.

And as it turns out, both Jackie and Jeremy have ancestors of Eastern European Jewish heritage. When both parents carry the gene, it means a 1 in 4 chance that every child could have the disease.

Following the diagnosis, doctors told Jackie and Jeremy that Lex’s prognosis for a long, happy and healthy life was grim.

But the couple understood the challenge they faced with caring for Lexi. They turned to their faith in God, and decided to make every day of Lexi’s life a celebration of the blessing of having her in their lives for yet another day. Every day became an opportunity to praise and thank Him for Lexi in their family’ life.

And during Lexi’s childhood, the family included her in all of their activities. Lexi went boating with the family — an activity she loves — and Jeremy made modifications to a camper so accommodate Lexi’s needs.

Lexi does not talk, but that fact does not mean she and her family can’t communicate. She communicates via her eyes and facial expressions. When her father roughhouses with her, the joy visible in her eyes of her appreciation of her father’s loving attention in unmistakable.

Caring for Lexi is truly a family activity, and her care has included the foster children the family taken in through the years. Everyone does their part and has a role to play. And the family understands the importance of keeping Lexi involved — they understand that the rule for vacations is simple: “If Lexi can’t do it, then we don’t do it.”

Janet Newton pushes her sister Lexi into position as the graduating students file into the gym at Nelson County High School. Click to enlarge.

The family helps care for Lexi and they understand her needs and the importance of monitoring her health. What could appear to be an overwhelming task of managing Lexi’s healthcare is just part of the family’s normal activity.

“The good Lord has given me the strength to get through,” Jackie says. “He gives you what you need. It’s not easy, its one day at a time — and sometimes you take it one minute at a time,” she said.

Jeremy agreed, adding that “You learn to enjoy today for what it is.”

Lexi, having outlived the expected lifespan of those with Canavan’s disease, gathered with her family Friday night to celebrate her graduation from NCHS with her sister Janet, who pushed her sister in her wheelchair across the graduation stage.

Lexi attended the county schools until the fourth-grade. At that point she began to experience recurring pulmonary problems — issues common among those with Canavan’s disease. The problems prompted the decision to keep Lexi home. She has continued to receive services through the school district while at home, including special ed services and therapy.

Caring for Lexi has never been an overwhelming task, Jackie explained.

“God gave it to me and I just had to handle it,” she said. “God gave her to me for a reason.”

“Through Lexi, maybe God has shown me something that other parents don’t get to see. Before Lexi, would have had the patience to deal with this? No. But then maybe He said, ‘You’re going to have the patience for this.’ ”

At graduation, Lexi and Jeremy’s family was joined by their extended family, which included Lexi’s current teachers, therapists, former teachers, and the family’s many friends to celebrate the night and to recall the beauty of God’s gifts they have been given through their individual roles in Lexi’s precious life.


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