Meeting Evan Gleason for the first time and one is introduced to a typical, happy three and a-half-year-old boy.

“Among his favorite toys are fire trucks, dump trucks, excavators, and he really likes cartoons, Disney shows and is really into Super Hero shows,” said his dad, Stan Gleason.

Unfortunately though, Evan suffers from Mitochondrial Disease, or Mito, a rare and inherited chronic disease, so rare, in fact, that many physicians and nurses have never encountered cases in their practices. It can appear at birth or later in life. People afflicted with Mito are estimated to be one in 4,000.

Because Mito is so uncommon, so much more research remains to be completed. “Actually, in the last two years, numerous medical specialists have left the field due to the lack of insurance companies willing to pay for this coverage,” said Evan’s mother, Sarah Gleason.

Sarah Gleason added, saying, “It’s an invisible disease. Basically, the mitochondria, the powerhouse of the body’s cells, become sick and start failing and dying off, and when that happens, it affects every organ of the body.”

There are many different mutations, and sadly, as of now, it’s unknown just which ones are involved, according to Sarah Gleason. “There’s an 80 percent chance we’ll never know because there aren’t any tests currently available.

“Sadly to say, at this time there is no cure for Mito, a progressive and fatal disease.”

Therefore, individual symptoms are treated rather than the disease.

According to the Mitochondrial Disease Foundation, headquartered in Pittsburgh, and which has been helpful to the Gleasons, “The parts of the body that need the most energy, such as the heart, brain, muscles and lungs are the organs most affected by mitochondrial disease.

“The affected individual may have strokes, seizures, gastrointestinal problems — reflux, severe vomiting, constipation, diarrhea, swallowing difficulties, failure to thrive, blindness, deafness, heart and kidney problems, muscle failure, heat and cold intolerance, diabetes, lactic acidosis, immune problems and liver disease.”

Evan showed no immediate signs of Mito at birth. Some weeks, later, though, his inability to hold down food became apparent, prompting his parents to seek medical advice. “It actually started with profuse vomiting, 24-7,” Sarah Gleason said. Believing the vomiting was very bad case of acid reflux, doctors operated  and gave him a feeding tube.

Then Evan’s neurological problems appeared, leading the Gleasons to believe, “OK, there’s something else going on.”

It took some time for doctors to finally diagnose the Mito. That was in November 2014, when Evan was not quite two years old.

A neurologist at Pittsburgh Children’s Hospital was the first to mention “Mito” to the parents.

While doing their own research, Stan and Sarah learned Cleveland Clinic can do live muscle biopsies and don’t have to send them away for analysis, where most hospitals, without this capability, must freeze them and send them away, and this can alter the results.

A Cleveland Clinic doctor was the first to say, “Yes, it’s Mito.”

According to Sarah Gleason, “Since Evan’s secondary insurance wasn’t picking up our visits to Cleveland, we returned to Pittsburgh Children’s, which has been a great move since all of Evan’s seven doctors are wonderful.”

Still, this has been a learning experience for those emergency room doctors at Children’s. They told Stan and Sarah, “We don’t know a whole lot about this disease, so you’ll have to be the ones to teach us.”

Speaking about this approach, Sarah said, “It’s comforting to hear one say, ‘Teach me,’ rather than act like they know when they really don’t.”

Evan tires easily. He attends pre-school for a few hours and can sleep for a five-hour nap the following day. He takes vitamins for this.

The Mito affects Evan’s gastrointestinal system, and he still uses a feeding tube, through which he receives two-thirds of his daily nutrition.

In addition, Evan has some food allergies. Though he can’t have cow’s milk, sugars and soy, he can tolerate coconut milk.

Referring to the special; diet, Sarah Gleason said, “Some of the foods we can find here in town, but for others we must travel to Wegman’s in Jamestown, N.Y.

Evan has also developed dysautonomia. Sarah Gleason said, “This is a breakdown of the autonomic nervous system, in which the body fights good things happening rather than letting good things happening.”

Due to this condition, Evan runs a low body temperature — 96 degrees.

And since he doesn’t sweat, his caregivers must closely monitor him on warm and hot days.

In Evan’s honor, the Lafayette Township Volunteer Fire and Rescue Department established Evan’s Rescue Call, a fund that awards an annual grant to assist a fireman or a fireman’s family in time of financial need.

The Gleasons were the first recipients of this grant that was used to purchase Evan’s cooling vest, a piece of specialized clothing designed to reduce body temperature and make exposure to heat more tolerable. The vest had to be modified to fit around his feeding tube. Insurance did not cover this expense.

Groups and individuals have been very supportive for the family throughout this trying time. Among these are Kids with Cancer, even though Evan is not a cancer patient. And, Zippo Manufacturing Co., Stan’s employer, has been especially supportive. “Mr. Duke is a very, very kind man,” said Sarah Gleason.

Because of Evan’s young age and the fact he’s living at home, his parents, of course, become his primary caregivers. “We work together as a team,” Stan Gleason said.

Evan’s nurses, who care for him while Sarah Gleason works part-time at Northwest Savings Bank, come from the Smethport office of Pediatric Services of America.

How does Evan react to his numerous treatments? Throughout all this, Evan has remained a brave little boy. “He does really well with them,” Stan Gleason replied. “This is probably because he really knows no different way of life than what he’s been through.”

Sarah Gleason agreed, saying, “While it’s heartbreaking to see him experience all this, it’s still a blessing that he handles it so well.”

By sharing Evan’s story, the Gleasons hope it raises awareness of Mito not only in the general public, but with the medical community as well.

Evan’s medical history has been a learning experience for the local doctors at Bradford Regional Medical Center, Sarah Gleason noted. “Our pediatrician team there goes above and beyond for us.”

Through this experience, Stan and Sarah have learned of two Mito cases in nearby Warren County and have been in contact with those families as part of a support group.

There are online support groups where the Gleasons communicate with caregivers as they share information and ideas.