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Sitting cross legged on top of the kitchen table with her younger sister having a picnic of cheesepuffs and juice, there are no signs of the devastating disease 6-year-old Mara Moon is facing.
But when she was 3, Mara, with her sparkling eyes and constant smile, began getting sick. She experienced several episodes of severe vomiting, accompanied by flu-like symptoms and lethargy. She would re-experience these same symptoms a few weeks later, in a cycle that continued every month.
Mara, who would go into a nearly comatose state and vomit every 15 minutes for days when she was sick, was so dehydrated she endured trips to the emergency room and hospitalizations to take fluids through IVs, yet physicians continued to diagnose her with the flu.
“Doctors originally told me she would outgrow it, but this was my first child and she was violently ill,” said Mara’s mom, Chariti Moon. “It just broke my heart.”
It would be two years before her parents would learn what was really wrong with their daughter.
“Last April, I finally googled it,” said Mara’s mom, Chariti Moon.
The episode prior, Mara had a seizure and her mom couldn’t stand to watch it any more.
“Five-year-old girl that vomits once a month,” Moon typed into the computer.
When she saw the results that popped up on her screen from the search, the concerned mother knew in her gut she had the answer. Within a week, the Wapakoneta family was traveling six hours away to Wisconsin to see one of two specialists in the country and the top in the world in his field. Chariti went armed with three years worth of journals and notes.
Dr. B. Li, of the Children’s Hospital in Wisconsin, provided the answers Chariti and Michael Moon had been looking for and after running tests he said their oldest daughter was a “classic case” of the disease. There is no specific diagnostic test for Mitochondrial Disease.
“He was finally able to provide an explanation for Mara’s condition,” Chariti said.
Diagnosed with cyclic vomiting syndrome, which stems from Mitochondrial Disease, Mara now takes five medications a day, which has reduced the number of episodes she has had to three in the past nine months. She also now has the energy to make it through a full day of school and has become more outgoing.
“Before we went to see Dr. Li, Mara was very withdrawn and very quiet, she was sick so much,” Chariti said. “She had cycles within cycles.”
But the medications have come with their own side effects — overactive bladder, chronic fatigue and elevated heartrates — which require her to take other medications to combat those problems.
While Mara’s episodes are fewer and farther between, her family still struggles with how sick she gets when an onset strikes, which unfortunately is usually at the happiest times in her life.
“High energy events bring it on,” said Mara’s mom.
So that means holidays, birthdays, trips, and even seeing her classroom for the first time — all the things children look forward to, also all make Mara sick.
Onsets also can be brought on by certain cheeses or infections.
“Her digestion slows down and she is constantly vomiting for days at a time,” Chariti said. “She gets in a coma-like state and can hardly lift her head to get sick. She’s so out of it when she has an episode.”
They rub a compound used by children going through chemotherapy on Mara’s wrists to try and keep her from becoming any sicker.
For the most part, Mara doesn’t realize how sick she gets and when an episode is over, it’s over. There are no lingering effects.
“I don’t think she thinks she’s different than anybody else,” said Mara’s grandmother, Kathy Wallace.
“She loves to color and draw and is the most organized little child, they say that’s part of it,” Wallace said.
Mara loves to dance and play with her friends and described as a mama’s girl, the kindergartner remains a bit shy.
Even though Mara has had to miss a lot of days her first year, she loves school and doesn’t hesitate to say her favorite class is computers.
At home, she combines her love for art and technology by drawing on the iPad.
Sitting holding her new puppy, Bella, Mara said its one of her favorite things to do, as she pets the dog’s black and white fur and pushes it back from in front of her eyes. It’s nice to be able to take care of someone else for a change.
But no matter what, her family said she is always smiling.
“You’ve just got to love her,” Chariti said.
Mitochondrial Disease and CVS
Mitochondria are the cells’ power plants, responsible for converting energy in food into chemical compounds. When the cells fail to work properly, an energy crisis occurs, resulting in Mitochondrial Disease. Cyclic Vomiting Syndrome is one disorder of the disease.
Referred to sometimes as abdominal migraines, some children will outgrow Cyclic Vomiting Syndome (CVS) by the time they reach age 8 or 9 when they will begin suffering from regular migraine headaches.
While many people think having a CVS episode is comparable to a bad case of stomach flu or food poisoning, it is much different, and CVS is actually a neurological disorder, caused by a problem with the nervous system, specifically the autonomic nervous system, which controls body parts that don’t require thinking about to use, such as the heart of lungs. The system is extremely responsive to emotions and to changes in the body.
In those with CVS, the autonomic nervous system doesn’t always work perfectly and sometimes responds incorrectly to emotions or other triggers, which then leads to a CVS episode. Since the system is so complex, even scientists who spend their lifetimes studying it do not completely understand it, or what is different in the autonomic nervous systems of CVS patients.
Since it’s not a stomach virus, the coping strategies are different — deep sleep, hot baths, cold compresses, continued drinking, and dark, quiet rooms — and more like those associated with migraines.
The best cure for Mara is to fall into a deep sleep. With a good four to five hours of sleep, her brain can reset itself and the episode will be over.
“We’re actually fortunate the medications have worked as well as they have,” Wallace said. “There are several different types to try.”
While Mara’s condition is considered bad, it’s not the worst physicians have seen with some children diagnosed with the disease vomiting every three minutes for many days at a time and needing to be induced in comas.
The family checks in with a visit to the hospital in Wisconsin once a year and inbetween visits, they communicate on the phone.
The disease, which is most prevalent in females, typically hits at one of three times in life, when they are toddlers, when they begin their menstrual cycle or around age 35.
Research has shown there is a link between the disease and migraines and that it is hereditary on the mother’s side. It’s a connection Mara’s family has been able to see when they trace their own genealogical lines.
Wearing purple T-shirts with pink letters spelling out “Team Mara” on the front and a picture of their favorite 6-year-old on the back, Chariti and her mother, Kathy Wallace, are planning to run a half-marathon Feb. 19 in Pasadena, Calif., to benefit Cure Mito as a means to raise more funds for research.
The two have ran together for several years and are looking forward to enjoying their outlet while helping Mara, after all 13 miles doesn’t seem like much compared to what she has been through.
The running duo is asking for the community’s support by making donations at active.com/donate/curemito/teammara. Donations also can be made to Chariti Moon at 508 Bellefontaine St., Wapakoneta, Ohio 45895.
A few donation cans have been placed in locations around town and a cousin is making and selling bracelets to raise money as well. Their goal is to raise at least $3,000.
No amount is too small to give and everything is greatly appreciated, Chariti said.
“We hope that with additional resources, Dr. Li and other doctors will be able to continue their research to help even more children and adults who suffer from this horrible disease,” Chariti said.
Efforts to find a cure are getting closer, she said.
“We’re trying to bring awareness,” Chariti said. “So many kids go from doctor to doctor and don’t really receive the help they need. They go undiagnosed because doctors are not familiar with the disease and do not know how to treat it. We want people to be aware.
“Our prayers are that one day Mara will be free of this disease and with your support she becomes one step closer as we cross that finish line,” she said.