Note: the Simon family has set-up a GoFundMe page here. It has been authenticated.
Makenna is a 9-year-old Palm Coast resident and student at Belle Terre Elementary school. She has a twin sister and two other siblings, the oldest a 14-year-old student at Matanzas High School.
“The One and Only Ivan is her favorite book,” Makenna’s father Tristan Simon says, referring to the Newbery Medal-winning Katherine Applegate book about a gorilla who’s lived some 10,000 days in captivity at a mall. “She’s kind-hearted, soft spoken, quiet, loving, just a really sweet, sweet girl. Extremely intelligent for her age, otherwise healthy, she’s never had any kind of health issue other than a cold or a flu. Normal weight for her age. Normal everything. She loves to swim. Dogs are her favorite things in the world. And her sisters.”
Her sisters, from whom she’s been separated since Friday, including her twin, from whom she’s not spent a night apart since they were born, Simon said this morning by phone, frequently unable to control his emotions. He spoke from within or just outside Makenna’s hospital room at Wolfson Children’s Hospital in Jacksonville, where she was admitted in the early hours of Saturday after her parents took her to the emergency room on another Wolfson campus the night before.
“She is fully oxygen dependent at that point,” Simon said. “That’s where we’ve been since. They did every test they could possibly think of in the world. The infectious disease doctor was our main caregiver when we got here. She didn’t leave any stone unturned, and by process of elimination, they were able to pinpoint it to covid related pneumonia. It took her a full 24 hours to get her on the correct medication for covid pneumonia.”
Simon first shared Makenna’s story in a striking, terse Facebook post Monday, “not for attention or sympathy, but in hopes of spreading awareness.” He spoke about his daughter’s illness and hospitalization at length this morning–including the description of such little-known details as the way medical personnel wrap her in an inflatable vest that helps shake things up in her lungs by creating air vibrations. “It’s dehumanizing and humiliating for her,” he said.
Makenna is at least the third child to have been hospitalized for covid-related illness since the delta variant ravaged through Flagler County, but the first whose ordeal has come to light. The account is a stark indication of covid’s reach, even among children. Confronting the glibness of covid-minimizers or deniers, the story Simon told illustrates the persistent and pernicious tenacity of the disease and the far-reaching effects of the illness beyond patients themselves–the way it upends, separates and traumatizes families, cuts off income, creates unspeakable loneliness even for those not hospitalized, and leaves its casualties fuming at a community’s refusal to embrace–beyond thoughts and prayers–the small, effortless measures that could prevent much of the harm to most.
“She is now oxygen dependent and in danger of being sent to adult ICU for more advanced oxygen treatment, if they need to go any higher at all,” Simon wrote on Monday, a post signed by his wife Laurie Simon as well. “Our baby is having the fight of her life and we do not see the light at the end of the tunnel yet. The doctors and nurses here all know us very well now, as we get way more visits than most patients due to her unstable status. So, while so many enjoy their body autonomy and ‘freedom,’ I am in a hospital room watching my 9-year-old daughter struggle to breathe. Was it worth it? Our family did everything right to protect ourselves AND you. Did you?”
Tristan Simon is a Realtor in Palm Coast. His wife works in an oncologist’s office. They and their four children have all followed covid protocols scrupulously, by principle as much as by necessity: Simon had open-heart surgery in Cleveland three years ago and lives with a genetic heart disease. He’s what’s called immunocompromised, meaning he’s at greater risk of complications from covid exposure. Both parents secured vaccines almost as soon as they were available. They masked up and had their children masked at school and elsewhere. As soon as the booster shot was available, Simon got one earlier this month.
It happened to be a day before his 14-year-old daughter, who attends Matanzas High School, complained of a slight sniffle and minor discomfort. That was on Sept. 8. She tested positive for Covid and began isolation in quarantine. Before long, three members of the family had tested positive for Covid. It was clear the entire family had been exposed. They all quarantined. The parents got antibody treatments. The illnesses were all mild, with few symptoms other than eight or nine days of fatigue.
By last week it seemed as if the family had weathered the outbreak.
Most had. Makenna had not.
She had a fever. The family cancelled its plans. Makenna’s parents took her to CentraCare off Palm Coast Parkway. She was running a 103 fever. She was tested for the flu. Her oxygen read 92 percent, below normal levels, though the caretakers didn’t tell the Simons: the Simons read the figure off Makenna’s chart. She was given Tylenol and observed for 45 minutes. The temperature didn’t fall. She was given a popsicle, and some Pedialite for hydration, plus ibuprofen. Finally the caretakers “said it could be possibly early covid and to check again on Sunday.” She was sent home. Her parents weren’t reassured, especially since the caretakers raised no red flags about Makenna’s oxygen levels. At home the Simons tested her oxygen again–they’d acquired the means previously–and were troubled by the results: 88 to 89.
“At that point that we decided to take matters in our own hands, we went up to Wolfson’s,” Simon said.
“At this stage, we had some decline and she was on the absolute maximum oxygen that they’re capable of handling in a regular hospital room, and her blood oxygen levels were still holding around 90- percent, hovering between like 88 and 92,” Simon said. All efforts were in keeping her from going to intensive care. “Thankfully we’ve been dodging that bullet. We’re at the cusp of it. They’ve lowered her oxygen slightly, so I’m feeling confident that’s not going to happen at this point. Had we been three hours later or 24 hours later I don’t know that would be the case. We’re just very fortunate right now.”
The entire focus has been on Makenna’s care. But at an unavoidable psychological and financial price. Financially, and dating back to the quarantine from the earlier part of the month, the illnesses have “destroyed my income,” in Simon’s words. “My wife has used all the paid time off she’s accumulated over the past 10 years she’s been with this employer.”
It’s only money, Simon says. His voice is not nearly as self-assured when he begins to speak of the isolation the illness has forced on his family. Makenna herself is “extremely lonely, depressed, sad. We can’t have any extra visitors,” Simon said.
His daughter has felt lonely from the separation from her sisters, especially her twin. The reverse has been just as true, minus the trauma of being in a hospital room. The children’s paternal grandparents have taken over their care, taking them to school, one of them spending the night at the family home so the children could still sleep in their beds, to minimize the disorientation. Simon’s mother showed up at the hospital and was told she could not visit her granddaughter: though two people are allowed as visitors, they have to be the same two people. No substitutions.
“I miss my kids. It just kills me not having all of them. I spend every minute of my life with them,” their father said.
Work has been set aside. The Simons stayed at a hotel over the weekend. They’re being set up to stay at the Ronald MacDonald house to cut down on bills. The length of their stay is uncertain. “I can’t give you the answer because I don’t know the answer but it’s going to be a few more days minimum,” a physician told the Simons, he said. Makenna’s oxygen is improving, but she’s been sleeping only a few hours day or night.
Because of the Facebook post, some school officials have reached out to the Simons. One of them was Colleen Conklin, the school board member, who has been speaking with Simon. “He appreciated me reaching out and he asked to please get his story out,” she said this morning. “He’s upset, he seems to be between angry and frustrated and of course has tremendous concerns for the well being of his daughter.”
Conklin had spoken of two children known to her to have been hospitalized previously. She’d spoken of them at a Sept. 21 school board meeting, a month after she attempted to enact a mask mandate in the schools and was shot down, as much by 3-2 votes as by much of the audience. “I said we have two children we know have had Covid and have been in the ICU,” Conklin recalls saying, “and was screamed at by the audience, ‘you’re a liar, you’re a liar,’ headshaking. It was ridiculous. I applaud the father for having the courage to share his story. The idea that it even takes courage speaks volume on the situation. The idea that anyone would feel any sense of fear or intimidation to share what is happening is part of the insanity of the whole situation.”
Jill Woolbright, one of the three school board members who voted against a mandate, wrote Simon this morning. “Ms. Simon,” she wrote, “I am sorry to hear that your daughter had to be admitted to the hospital with COVID. Please know I will be keeping her and your family in my prayers. Please keep me abreast of her condition when you are able and let me know what I can do to assist your family.”
Simon replied: “You did this to my child, your disinformation on healthy children’s recovery put us here! We trusted the school board to make the right decisions. You should be ashamed of yourself for pretending to care. Unless you have a plan to protect the other children then do NOT contact me directly. If you saw the humiliation my otherwise healthy 9 year old is being put through maybe then you would grow a heart. And I am a man, Ms. Laurie is Mrs. Simon.”
The Flagler school board’s decision to vote down a mask mandate was not unusual–at least not in Florida, where Gov. Ron DeSantis and his agencies have issued orders banning mask mandates, and where DeSantis’s Education Department has docked the pay of school board members in some of the counties that have defied the orders. Only a dozen counties did so, only two were docked any pay, and several of those that defied the order have since retreated and fallen in line with the state. Flagler school board members–and Woolbright especially–insisted that they were not in a position to “break the law.” Board members Conklin and Cheryl Massaro disagreed, arguing that children’s safety was their responsibility, and that it was paramount. The masking ban is in litigation.
The school district this afternoon issued the following statement: “This student and her entire family have been so supportive of Belle Terre Elementary School, and the BTES family is doing everything they can to support them. Belle Terre teachers, students, staff, and administration stand in support of this student. They are writing and collecting cards for their classmate as well as making plans to purchase gift cards the parents can use as they go through this process.”
The reference to Makenna as “this student” is not intended to be cold-hearted: the district by law is required to abide by student privacy laws, and may not disclose names in health-related matters.
Conklin has no doubt that the issues are not over. “Unfortunately, covid is here to stay, and eventually,” she said, “this will become part of an endemic. Until that happens, it’s going to take each of us looking out for each other.”
As for Makenna, her father concluded an interview today with his own reassurances: “To be clear: It will all be fine. It’s just the struggle,” Simon said, his voice again breaking. “She will be OK.”