Big Canoe pilot transports Jasper boy
with rare medical condition
David Howe, a volunteer pilot with Angel Flight of Georgia, recently flew Dakota, six, with his mother, Melissa, out-of-state to treat a rare disorder. Pictured (l-r) are Dakota’s father, Dan, sister, Amber, David and Peggy Howe, Dakota and Melissa.
Early Saturday morning at the Pickens County Airport, six-year-old Dakota and his mother Melissa climbed aboard a small, single-engine aircraft headed for Richmond, Va.
After the two-hour flight, Dakota and his mother would be picked up by another pilot who would take them to Wilmington, Del., where a third would carry them to New Haven, Conn., the city Dakota travels to once every two months for highly specialized treatments for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections, a rare condition also known as PANDAS.
“Next to no doctors treat this because they don’t know how,” Melissa said. She lives in Pickens with her son, Dakota, her daughter, Amber, and husband, Dan. “Doctors kept telling me he had OCD, but I knew that wasn’t right. One day, the day he got saved at our church actually, he had a breakdown on the way home, and we knew then something was really wrong. He had a panic attack. I couldn’t explain it in words really. He was shaking and screaming. He thought he had something crawling on him.”
Melissa said she got out baby wipes to clean Dakota off, but her son was inconsolable.
“He did that all night long,” she said. “A few weeks later was when he got really sick. He thought germs were on him and we wanted to wash them off, but because the doctors thought he had OCD, I tried to do the cognitive behavior therapy where you don’t let them go through the ritual so they know they will be okay without it.
“He was kicking and biting, all that, so I held him down, and I felt like I was torturing him,” she said. “He said, and this was a five-year-old, but he said he wished Jesus would kill him, so he didn’t have to live like that. He said he knew his thoughts were wrong, and the germs weren’t real, but it felt real to him.”
Melissa said until his kindergarten year Dakota was a healthy, happy child. She says symptoms of PANDAS began to appear in January after he received his streptococcal vaccine, but she didn’t make the connection until later that year.
“Any normal kid would have been fine with the vaccine,” she said, “but his body doesn’t produce the antibodies to fight strep.”
In bacterial infections such as strep, the body produces antibodies to fight the invading bacteria, and the antibodies help eliminate the bacteria from the body. But with PANDAS, those antibodies mistakenly recognize and attack a part of the brain called the Basal Ganglia, which is believed to be responsible for movement and behavior. The antibodies interact with the brain to cause tics and OCD symptoms.
Dakota rapidly began having behavior and speech problems and found it difficult to pay attention in school. He then quit speaking up in class and started developing tics with his mouth and his eyes, and would spin around in circles.
“By May he forgot all of his letters and couldn’t write anymore,” she said. “It was horrible. The teachers didn’t believe it was an illness but he couldn’t help it. They thought it was intentional. He couldn’t socialize anymore and the children were so cruel to him.”
Dakota’s ADHD/OCD-like symptoms got so bad that his mother eventually took him out of school, and Melissa elicited help from her mother and her mother-in-law to help with his home schooling.
“My mother-in-law moved from Utah into our home, and we all just took turns, because I had to work,” she said. “The medical bills just kept coming in.”
Before Dakota was officially diagnosed with PANDAS, a condition that was discovered in 1998, doctors time and again said he had OCD, but Melissa suspected that assessment to be a misdiagnosis, and she began doing her own research online. That’s when she discovered the rare disorder.
“He met every requirement on the list, but the doctors said it was too rare and didn’t believe me because it was unheard of, so I went to the source and called the doctor that discovered it,” she said.
Melissa contacted the physician, who responded the same day via email.
“She said she was 99 percent sure that’s what he had,” she said. “She told me to go to the pediatrician and have them call her, and she would tell them what test to run.”
After receiving the final PANDAS diagnosis, Dakota’s family began to explore treatment options, which at first involved antibiotics.
Dakota took antibiotics for four months with no results when Melissa said they decided to go ahead with experimental IVIG treatments, where antibodies from human plasma are administered intravenously over a two-day period of time.
“It was so risky,” she said. “But we didn’t know what else to do.”
After the first and second treatments, while continuing the antibiotics, Melissa said there were no visible improvements to Dakota’s symptoms, but by the third treatment he began to make considerable strides towards normalcy.
“He was walking fine and talking fine, and his hand, feet and eye tics have disappeared,” she said.
Last Saturday, July16, Dakota boarded the plane at the Pickens airport for his sixth treatment. He was headed to Connecticut to be seen by one of only four doctors in the entire country who specialize in the disorder.
“Now everything he lost has come back,” Melissa said. “He remembers his ABCs and all that now. It was like a light went off and then clicked back on. All he has now is sensitivity to light and taste.
“We’ve done so much praying and feel so blessed. If you look at him now you wouldn’t even know there was anything wrong, but if he’s infected with strep again it would all come back, so I’m really worried about that in the future,” she said.
Dakota will continue the IVIG treatment for a unknown period of time, and he may have to take antibiotics for the rest of this life. Melissa said Dakota will soon attend a private school in Ellijay to lessen the chances he could be infected with strep again.
That small aircraft Melissa and Dakota boarded last Saturday is owned by Big Canoe resident David Howe, a pilot with the non-profit organization Angel Flight of Georgia.
Angel Flight is a national organization that provides free transportation to those with medical and financial needs, and Melissa says the company has been invaluable with the frequent, long-distance treatments required by her son’s condition.
“They have taken us on all but one, and that was because of snow,” she said. “The people with Angel Flight are so incredible. They take the stress and pressure out of everything. I can’t imagine having to coordinate travel for this. Connecticut is a two-day drive, and I’d have to take off a week from work.
“They are just very compassionate and save so many lives by helping you get the medical care you need,” she said.
Angel Flight connects volunteer pilots like Howe with families like Melissa’s. Pilots pay for all flight expenses, which can cost several hundred dollars per hour; families aren’t asked to pay anything.
“The mere fact that I can get in a plane and fly somewhere is a blessing,” Howe said, who estimates he has completed 40 to 50 Angel Flight missions in the 11 years he has been involved with the program. “It’s something that I feel extremely fortunate to be able to do. This is one way to give back a little to people who really need the service I can give them.
“To see the look and hear the words of the people that we fly is all the reward that anybody could need. They really, really appreciate it. These diseases have hit these families financially very hard,” he said.
Howe is retired with his wife Peggy, who often sits in as copilot, and their retirement allows them to commit to missions at the last minute.
“Since I’m here [in Pickens] Angel Flight called a few months ago and asked if I could bring [Melissa and Dakota] back from New Haven, and I picked them up in Richmond,” he said the day before this past Saturday’s takeoff. “That’s the same flight I’m doing tomorrow.”
The only qualification for Angel Flight passengers is that they be ambulatory and able to sit in an aircraft. Pilots are not equipped to provide medical assistance.
“They have to be able to make the flight without issues,” Howe said, who noted that two-thirds of the passengers he carries are children like Dakota.
“There are hundreds of medical issues with the children,” he said, “but the big three are cancer, burns, or transplants where they are being evaluated for a procedure.”
Melissa said she plans to continue using Angel Flight for the duration of Dakota’s procedures, and Howe encourages families who need assistance to contact the organization.
“Dakota looks forward to the flights now,” Melissa said. “The pilots make it so special for him and give him a little teddy bear, and we stay at the Ronald McDonald House when we’re up there, so he feels like it’s a vacation. We’ve had a hard year, but we’ve prayed a lot and have been so blessed to be where we are today.”
If you would like to learn more about Angel Flight in order to become either a passenger or a pilot, visit www.angelflightsoars.org or call them at 770-452-7958.