I will toss aside all objectivity and acknowledge these words are appearing through soggy eyes.
They are words that were destined to be written, just as a Wewahitchka mother and father wrestled, with infinite grace, with the inevitable for years.
Ross Davis, who, along with his sister Meredith, provided a local, and tragic, face to Sanfilippo Syndrome, died over the weekend.
He was not yet a teenager, passing at the age of 11, about average given what is considered the life expectancy of children afflicted by Sanfilippo Syndrome.
And Sanfilippo Syndrome is a horrific adversary of children.
Words such as “terrible” and “horrible” have punctuated comments on social media.
“We never heard of it before the diagnosis,” said Ross’s mother, Jessica Davis, in 2015. “We had gone to a doctor in Jacksonville and he took a quick look at Ross and said it was Safilippo Syndrome.
“We had a genetic test and it was confirmed.”
Unfortunately, the research into Sanfilippo Syndrome was at the same place as medicine as a whole; medicine was just catching up to the disease.
The disease is staggeringly rare and lethal, a genetic disease that afflicts less than 1 in 70,000 children, just 2,000 in the US alone.
There is no known cure; children afflicted typically die before adulthood.
Adding to the tragic nature of the story of Ross and Meredith Davis is the sheer odds of their being afflicted.
Sanfilippo can only be passed to an offspring when both parents carry the recessive gene for Sanfilippo Syndrome.
But, even if both parents are carriers, there is just a 1 in 4 probability the child will be afflicted.
Incredibly, shortly after Ross was diagnosed so too was Meredith, meaning Andrew and Jessica are likely to face this same journey in the coming years.
In layman’s terms, Sanfilippo is a metabolic disorder caused by the absence of a specific enzyme which acts to “scrub” brain cells in the natural recycling function of a healthy individual.
Brain cells thus fill with waste the body is unable to process, causing cellular malfunction and progressive brain deterioration.
As damage progresses, the individual experiences hyperactivity, sleeplessness, loss of speech and cognitive skills.
In Ross’s case, it transformed a boy his pre-K teacher Darlene Ake described at 5 as, “He likes friends, tells jokes, he likes to play.”
Early after diagnosis in 2015, Jessica said Ross was hyperactive to the point of exhaustion but, tragically, began to calm down as the disease took its course.
He spent his final years confined to a wheelchair but nonetheless became one of the most popular, well-known children in the school district.
Everybody, it would seem, knew Ross, knew Meredith, loved them both.
Each year, during field day for the Bridges classes, classrooms for physically and mentally challenged students, Ross, with aid, was in the center of the action.
With Jessica along camera in hand.
“He was such a sweet soul,” said one school employee.
Jera Horton said, “Everybody loved him.”
Ross’s popularity was such that the staff and children at the Bridges class at Port St. Joe Elementary School took his death, though inevitable, hard.
Though this was Red Ribbon Week to activate the fight against drugs, Principal Joni Mock asked that students and faculty wear purple to remember Ross.
For his visitation and services today and Friday, children were encouraged to wear their Halloween costumes.
“Ross would have loved it,” wrote Rev. Mike Stroud of First Baptist Church of Wewahitchka.
And while the community mourns a loss, it also stands in solidarity with Jessica and Andrew.
As one person noted on social media this week, Jessica, “moved heaven and earth” for her children.
Despite the reality that this human she gave life to would leave her after a slow, agonizing decline to sunset and a “horrible” death and nothing could change it, Jessica was, at least in public, unflappable.
Every year she visited with Ross and Meredith in tow to talk to Wewahitchka Elementary School students about Sanfilippo and how much an annual fundraiser aiding the Cure Sanfilippo Foundation could help.
The annual fundraiser has raised thousands of dollars for the foundation and its work to find a cure.
Jessica lobbied for that cure and strived, founded in her faith, to enjoy every day she could with her children while they were still alive, while they still recognized her.
“There were a lot of prayers and I questioned God a lot,” Jessica said in 2015. “We have drastically changed our life. It is all about the kids now. We are adventurous anyway, but now we’ve always got someplace to go and something to do.
“And we always take the camera … We know we will have these memories.”
Many others will also.