Les and Celeste Chappell were parents of a happy, large family of nine children when their three youngest children started having trouble with their eyesight. Soon after, the children started having seizures, and the parents knew that there was something horribly wrong.
Les and Celeste took their children Christopher, Elizabeth and James to specialists, where they first heard about Batten disease. According to the Beyond Batten Disease Foundation, symptoms include blindness or vision problems in children between five and ten years old, and seizures typically starting around eight years old.
Over a period of time, an individual with Batten disease experiences repetitive speech, loss of speech, dementia, loss of motor skills and eventually, premature death.
A scary realization
One night when Les and Celeste were on a date, they decided to discuss the fact that this disease might be a reality for their children. Elizabeth was later tested for the genetic disease, and when her results were positive, the doctors diagnosed Christopher and James as well.
After a long struggle with the rare disease, Les and Celeste had a tough decision to make. Their children had lost the ability to swallow, and were being fed through a feeding tube. This past July, the heartbroken parents made the decision to take their children off of the feeding tubes, and let them pass away in peace and comfort.
Three deaths in three days
Elizabeth was the first to pass away on July 14, 2017 at 19 years old. Her brother James followed the next day at 15 years old, and then Christopher was the last to go at age 20 on July 16, 2017.
They held onto their faith
The parents were absolutely heartbroken to lose their children, and they will have to go through it again, as their youngest child Samuel was also diagnosed with the disease. However, throughout the whole ordeal, they held strong to their faith.
Because of their Mormon faith, the family was able to find comfort in the belief that they’ll see their children again someday, and they’ll all be together forever.
The triple funeral
The siblings were all buried at the same time, and the caskets were lined up with flowers on top of them that represented each child’s personality. Roses for Elizabeth the princess, Christopher had sunflowers because he was always smiling and James had blue wildflowers because he was “all boy,” according to the Washington post.
The parents purchased three double-depth plots for the burial. Christopher and Elizabeth shared a plot while James was buried in a separate one, where Samuel will join him later. Then when Les and Celeste pass, they’ll take the third plot to lay by their children.
While this genetic disease is extremely rare, it is common for it to affect more than one child in the same family, which was the case for Elizabeth, Christopher and James.
You’re not alone
If you’ve had a child with a terminal illness, you can understand the heartbreak and tragedy it brings. It’s an absolutely horrible thing, but you’re not alone.
Another girl from Utah passed away in 2014 from Batten disease, and one of her last wishes was to raise awareness of the disease and show what daily life is like when battling it. Her father created a Facebook page called Kennedys HUGS where he posted updates and what life was like with Kennedy.
Although Kennedy passed away, her legacy lives on by raising awareness of the disease and sharing her incredible story. Her dad still posts memories and updates on the Facebook page, and her story was made into a movie called "Love, Kennedy."
Losing a child is something that no parent should have to go through, but the legacy they leave behind is remarkable. These families are in our thoughts and prayers, and we hope they can find peace and comfort during this difficult time. For more information on Batten disease, visit the Beyond Batten Disease Foundation.