It was because of the Festival of Trees last year that they found one another and formed a friendship of understanding and encouragement. This year two families from Sandy and Draper will team up on a festival tree to raise awareness of the debilitating illness that they each face with courage.
The Heidelbergers live in Sandy while the Bennetts live in Draper. Each is a family with three daughters. They live in different towns and attend different churches, but it’s what they share that has brought them both comfort and hope in finding one another.
Emma Heidelberger was just a few weeks into sixth grade when she woke up last Oct. 1 and was unable to get out of bed.
“It was a sudden onset. She woke up and the whole room was spinning. She was so dizzy she couldn’t stand up and she had chest pains,” her mother, Marcy Heidelberger, said.
They initially thought it was the flu, but when Emma was still unable to get out of bed a few days later, they took her to the pediatrician.
“They really didn’t know what to diagnose her with,” Heidelberger said.
The pediatrician advised them to see a cardiologist because of the chest pains, but it would take weeks for an appointment with that doctor.
“She wasn’t getting better; she was getting worse,” Heidelberger said of Emma, who spent that month in a wheelchair.
After hearing of Emma’s symptoms, a friend of Heidelberger’s advised her to look up POTS (Postural Orthostatic Tachycardia Syndrome) on the internet. POTS is a dysfunction of the autonomic nervous system, a cluster of symptoms frequently seen together that affect a person’s breathing and digestion and can cause chronic pain, migraines, dizziness and low or high blood pressure, among other things.
Heidelberger looked it up and watched a Mayo Clinic video with a description of POTS.
“It explained Emma to a T,” she said.
Heidelberger then found out via Facebook that a doctor in Colorado was familiar with POTS.
Anxious for answers, Heidelberger and her husband flew with Emma to Colorado where she was diagnosed with POTS at the end of last October.
Meanwhile, Bryn Bennett of Draper had struggled with a myriad of debilitating symptoms that kept her from going to school for her fifth, sixth and seventh-grade school years. She had been allowed to “pop in for socialization,” her mother, Brandy Bennett explained. But she had to be home-schooled, and it was 15 months before doctors diagnosed her as having POTS. That happened in February of 2013.
“We missed the big picture that explained everything else,” Bennett said. “Had we known, it would have saved us a lot of testing and procedures. We could have improved her quality of life sooner.”
Shortly before Emma’s diagnosis, but when they were growing more certain that was what was ailing Emma, Heidelberger saw a story on a young woman in Sandy with POTS named Aubrey Slack. Aubrey and her mother invited Marcy and Emma to decorate a tree for last year’s festival.
Bryn Bennett’s grandmother saw a story about it in a local newspaper and told Bryn’s mom, Brandy, who then contacted Heidelberger .
“We just started talking and comparing notes. We…connected,” Heidelberger said.
Emma, now 13, and Bryn, now 14, have formed a strong bond. For the first time in three years, Bryn is back in school half days and Emma is able to go for math, science, English and history classes. The girls talk or text daily as do their mothers.
“When they get really bad or really down, they always can talk to one another,” Heidelberger said.
Last April, the girls and their mothers traveled to the Mayo Clinic together. They flew together, had hotel rooms next to one another, and learned more about the syndrome and treatments available to them.
This year, the Heidelbergers and the Bennetts have teamed up to do a tree themed “Circus of Hope” for the Festival of Trees. Marcy Heidelberger explained that the idea for the theme came from a play on the words “circle of hope” where people come together hoping for a good outcome.
“POTS is like a circus; it’s this random, rare syndrome that has many different symptoms. Every single person that has POTS is completely different, kind of like a circus show…it has its ups and down, kind of like being in the circus every day,” she said.
They’ve relied on Primary Children’s Hospital for testing and for validation of Emma’s illness as well as loving care.
“We’re blessed to have a facility so close. I wanted to do a tree for that reason. I felt like I needed to give back. By giving back, I’m hoping to bring awareness to POTS,” Marcy said.