BIRTHDAY CELEBRATION … Front Row – Cherish Brown, Dexter Hannaford, Daphne Hannaford. Back Row – Eric Hannaford, Alex Brown, Karen and Mike Merillat. (PHOTO BY RICH HARDING)
By: Timothy Kays
Those who have read my writings over the past 15 years have no doubt noted that I firmly believe that in the villages and small towns of our area, there exists a certain level of humanitarianism and community compassion for neighbors that can’t be found in larger cities, and it has echoed through our communities for over 150 years. Proof positive of those community ties of love between friends and neighbors was on full display at Walz Park in Edon on the afternoon of July 27.
With the COVID-19 pandemic still holding sway across the state and the nation, things like public gatherings and parades have either been curtailed, or cancelled outright. When a special occasion arises, a very special occasion like the ninth birthday of Daphne Hannaford of Edon, creative minds come together to find a way to make a special celebration, one that wouldn’t run afoul of COVID safety edicts and protocols, for a very special small town girl like Daphne.
Daphne may be only nine years old, but she has had to battle to get this far. In the fall of 2019, she was diagnosed with a DIPG (Diffuse Intrinsic Pontine Glioma), a rare and highly aggressive cancer that strikes the pons brainstem area just above the medulla oblongata.
Because of where the tumor resides, surgery is virtually impossible as the pontine tissue being overtaken by the tumor controls essential bodily functions such as heartbeat, breathing, swallowing, eye movement, eyesight, and balance.
Targeted radiation is the only truly successful therapy, and even then it only slightly slows the progression. The tumor interferes with all bodily functions, depriving a child of the ability to move, to communicate, and even to eat and drink.
As a DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing.
In the end stages, the tumor interferes with breathing and heartbeat. The disease is fatal, usually within a year. The two-year survival rate is 10%, and the five-year rate is only 2%. It takes a fighter to get as far as Daphne has, and to hear her teacher, Brenda Parrish, describe the situation, Daphne has DIPG…DIPG does NOT have Daphne.
“She was a third grader this year,” Brenda said. I was her second grade teacher at Edon. When she came back to school last fall, we all knew something was up, and I believe in September last year she was diagnosed with DIPG. It’s attached to our her brainstem…inoperable, untreatable.”
“I also did her homeschooling this past year, which was great because we already had a relationship. So I’ve got to see her through this whole process.” “She turned nine on Monday,” Brenda continued. “I was talking with her mom and I said, ‘What can we do to make this a big one?’ And she said, ‘I don’t know.’ Right now she has a feeding tube. She can’t do much of anything.”
The idea of a parade was floated, but as Daphne and her family live on a major highway, a parade wasn’t feasible, not to mention the COVID protocols.
What to do? Enter the community, and with a little help from a Facebook events page entry, the plan began to take form. Brenda recalled, “Together with another teacher, a parent that helped me out, and a lot of community people, I put together a scavenger hunt for (the family) that took them from some of the businesses in town, and gave them different clues.”
“She ended up at Walz Park in Edon, where we had everyone waiting for her. They pulled in, we sang Happy Birthday, had a balloon release, and then we did a parade right there in the parking lot. The people were amazing! We had fire trucks there from Edon. There were several sheriffs’ cars that were there. Chief Tom (Szymczak of Edon) ff course, and a lot of the community.” “Her classmates and their parents brought decorated cars and brought cards…it was pretty awesome. It’s just a terrible situation you know, just because there’s nothing unfortunately that they can do for her.”
What did Daphne think of all of this? “You know,” Brenda said, “…I took her first clue out for the scavenger hunt on Thursday, and was talking to her. She can roll her eyes; that’s basically the only response that we have from her right now. I was picking on her and I said, ‘You know, somebody’s got a birthday coming up. I don’t know, I suppose it’s a big deal.’
“And you could tell…her eyes flipped up and down so I knew she was kind of chuckling at me. I asked, ‘How do you feel trapped inside your body?’ She understood what I was saying. She knew I was there. She knows who I am, but there’s just no way that she can really show much of anything. She can’t communicate besides rolling her eyes, and she does do that.”
“She tends to roll her eyes at me sometimes when I get to corny with her, but it’s been it’s been quite a ride. She has a younger brother, and he’s taking it very hard because they are they are pals; they are inseparable. It’s just terrible that something like this can happen to a child. It’s terrible to happen to anybody, but a child to say the least. Her class did what’s called ‘monkey in a chair’, because she was gone most of the year.”
“That monkey…they would write it notes, and they’ve kept a little diary for it that would go back and forth to the home so Daphne could keep contact with her friends in our class.”
“This will be my 27th year of teaching; this is the first child that I’ve had that has had a condition like this,” Brenda said. “It’s rough, but she’s a fighter. I think she was pretty excited about the whole thing. The fire trucks were very loud…I think she thought that was pretty neat.”
“We did everything in purple, because purple is our favorite color. And so we had purple balloons that we set off. The community was amazing, showing out, showing up, decorating cards and making signs. They’d drive by and the kids would be out the sunroof with their signs, holding them up and yelling at her.”
All it took was one special, determined child, and one determined village and…voila. “I know it meant a lot to Daphne, and I know it meant a lot to her family.”
Timothy can be reached at tim@thevillagereporter.com
