Abbie Reina sat at the end of the kitchen table as she awaited her mom, Christine, to come downstairs. Her charcoal colored IV bag, adorned with ribbons lay in front of her.
A smile was on her face as Abbie, a 15-year-old Daniel Boone sophomore and daughter of John and Christine, remembered the importance of each one.
She went on, pointing out a cowboy boot-filled ribbon that signified her trip to a Darius Rucker concert, a tie-die ribbon and others that symbolized her appearances in field hockey games, trips to the beach and a New York Mets game.
There were approximately 60 ribbons, all with a story to tell.
Yet, the greatest story comes from her.
On the outside, Reina resembles the quintessential teenager.
On the inside, however, Reina, who is battling Dysautonomia, is waging a war.
One she faces with a radiant, ever-present smile.
“There’s nothing you can do about it,” Reina said. “You can’t control the uncontrollable. You just have to go with the flow.”
* * *
Abbie’s mom, Christine, came from upstairs and took a seat next to her daughter at the kitchen table. In her hand was a long thread of beads, many of them heart-shaped, that she cautiously placed in the middle of the table.
“Every doctor’s appointment she goes to, she puts a bead on,” Christine said of the thread that hangs on the IV stand near Abbie’s bed. “There’s quite a few on there.”
In total, there were 136 beads since January. Trips to Cleveland, the Children’s Hospital of Philadelphia, blood work, lab tests and hospitalizations were all accounted for as her family searched for what was inflicting Abbie.
The Reina family eventually learned that she suffered from Dysautonomia, an umbrella term used to describe various medical conditions that cause a malfunction of the Autonomic Nervous System, which controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control.
Dysautonomia is not a rare condition, with over 70 million people worldwide living with various forms of the condition. It’s a disease that can affect any race or gender, but it’s one in which it may take years for a patient to get diagnosed and one that cannot be cured.
“Our goal was to make this positive for her and each bead and each ribbon is one step closer to getting better,” Christine Reina said. “Some of the beads were a setback but you count the good with the bad, right?”
Christine then started to ramble off the various medications that Abbie was on, Abbie counting on her fingers as each was named, each finger ready to rise to account for the lengthy list.
The total equates to 36 pills a day — five Creon tablets for each meal to supplement the endocrine portion of her pancreas not working. Pills are then taken upon waking up, breakfast, lunch, dinner and before bed. All of that to go along with her nasogastric feeding tube that’s used because she has lost some function of her swallowing, giving her the 100-plus fluid ounces she needs in order to have energy to eat regular meals during the day.
“I feel horrible when I wake up. I can’t just hop out of bed. I have to sit up slow, get myself prepared then get out of bed. My blood pressure goes up anytime I try to get up after laying in one position for a long period of time,” Reina said. “Normally I have a bad headache every morning or my legs hurt. It’ll get better throughout the day but there’s always something in the morning.
“I can normally tell what kind of day it’s going to be. That’s my hint right off the bat whether it’s going to be an OK day, a good day, a bad day.”
If there is any relief from the staggering number of pills and doctors visits, it comes from Abbie and her family finally knowing what is inflicting her.
That wasn’t always the case.
* * *
It started with a sore throat.
It progressed into much, much more.
Coming off the Daniel Boone field hockey team’s district playoff run, Reina had taken a step back physically, which had begun a harrowing five-month span from October to March.
Countless doctors visits and countless tests were administered on Reina, who was believed to have suffered any disease from mononucleosis to Lyme Disease.
Or even worse, no disease at all.
“I took her to a pediatrician and I asked them to do bloodwork because she was sleeping in class, which she never did, especially as an honors student,” Christine said. “That came back negative so I said, ‘Can you do it again?’ They pacified me, did it again and it still came back negative. It was just unraveling, there was no strep throat, no Lyme Disease, no mono, no nothing. Everything came back negative and that was part of the problem: everything was coming back normal. So we didn’t know how to treat her.”
“I knew I was sick but if you looked at me, I looked healthy,” Reina said. “I looked like nothing was wrong, but the things I was describing was wrong with me, they would say, ‘OK, something doesn’t match. It’s all in your head.’ I knew it wasn’t and my parents knew it wasn’t but it was hard to hear.”
As the search continued to pinpoint what ailed her, Reina’s health was deteriorating.
Still playing indoor field hockey for the Vipers Indoor club, Reina would fall into spells, tranced on the court as her stick dangled by her side.
“I would hear a muffled sound and my fingertips would get all tingly,” Reina said. “I just had to stop for a second and it would go black. By the time I squeezed my eyes tight, opened them, squeezed them tight, and opened them, it would be done. But during that, it’s scary when you can’t see. You couldn’t hear anything clearly.”
“I was on the catwalk at Spooky Nook and she was playing down below and she was standing there,” Christine said. “You can’t really hear in there and I’m screaming her name because I knew what was happening. It wasn’t like my screaming was going to make it any better, but I was just hoping that it would almost make her snap out of whatever she was in.
“But you could just see it. She would turn gray, and she would just stand there with her stick just dangling there at her side.”
Their search took them to Chicago in early March. Reina, suffering from weight loss, went through two doctors visits before being told she wasn’t going home. She was entirely too sick.
Reina saw a cardiologist and a neurologist before seeing a mitochondrial specialist that performed a tilt table test on her, one that straps you onto a table laying down and tilts your body to a head-up position in order to simulate a change in position from lying down to standing up.
The table then remains upright for up to 45 minutes while heart rate and blood pressure are monitored, allowing doctors to evaluate the heart’s response. Reina didn’t last five minutes, her heart rate jumping from 60 to 180 beats per minute in that span with the slightest amount of movement.
“Six inches, barely anything and my heart rate skyrocketed,” she said.
From there, Abbie was given the news about the possibility of continuing her field hockey career.
“I remember when they told us in Cleveland, it was March 13, a Friday,” Christine said. “They gave us new medicating dosages and Abbie asked how long until it takes until it works and the doctor said six months. She was like, ‘But I have field hockey in August. What do you mean?’”
“The doctor told her that her heart wouldn’t be able to withstand it (in her current state) and that she wouldn’t want to be one of those players that doesn’t make it off the field.”
The prospect of playing field hockey felt even more distant after that. Held out of school since January of her freshman year, she was inflicted with a new symptom of dysautonomia through the summer.
She experienced facial swelling in February followed by excessive sweating in March. Blood started pooling in her legs in April, noticed by her mother while she was an inpatient at CHOP. She lost the ability to swallow in May, vision in her right eye in June and finally hearing in her right ear in July.
“About every month something has happened,” Reina said. “We touched all the bases.”
“We weren’t anticipating any of that at all. That’s what made it so complicating,” Christine said. “Trying to fit her into one category of one form of treatment is almost impossible to do because she doesn’t suffer from just one thing.”
“Our line of sight was ‘She loves field hockey, we need to get her back into field hockey.’ It went from field hockey to getting to school. Then, we just needed to get her out of bed, we just needed to get her up. It changed as she got more sick. It definitely was life-altering. But, this is our norm now.”
Reina collecting spoons fromTulpehocken players. Spoon theory one of leading explanations of effects this disease has pic.twitter.com/TSqPhRjlgM
— Sam Stewart (@Samuel_Stewart7) October 2, 2015
* * *
Six months later, Reina’s tears were masked by the rain that pelted Brazinsky Stadium.
Friday afternoon, ahead of the Blazers’ field hockey game against Tulpehocken, Reina’s tears were ones of joy and appreciation.
Reina went through the warmup line, receiving spoons from Tulpehocken players, which came in reference to ‘Spoon Theory’ that was named by author Christine Miserandino as she demonstrated, with the visual aid of spoons, how a person with a chronic illness only has a finite amount of energy for everyday tasks. Each spoon given represented the transferring of some of their energy to Reina.
Reina returned to school on September 8th for her sophomore year. She became healthy enough to play a sport she loves, even if it’s for three to five minutes. Participating is a feat in and of itself.
This game, however, was a little more special … It was in honor of her. Over 400 T-shirts celebrating the fight against Dysautonomia were sold, many of the parents and all of the Blazer team members were donning them pregame.
“When I found out about the game, I cried. I really did,” Reina said. “I was numb and I just looked at my mom and started crying. I couldn’t believe it. I didn’t know about the T-shirts or anything yet either, and when I learned how many T-shirts we sold, that just blows my mind.
“My field hockey team has been amazing. Even when I first showed up, when they first saw me with the tube in, none of them treated me any different. I liked that. It’s hard, even in public some people just stare. ‘Yeah, I have something coming out of my nose, it’s OK,’ but I really appreciated that they were them and they wanted to hang out still and do everything still. I appreciate it.”
Reina played the first six minutes in the cold before coming out, her smile brightening dreary skies. Her team went on to defeat Tulpehocken 3-1, another victory in a day already filled with them.
“She’s my favorite person in the entire world,” her brother Johnny said. “She’s 15 years old but she’s been through more in her life than anyone I know. There’s no comparison. The way she battles everyday and still have a smile on her face, a smile that lights up a room, that’s pretty special. In my eyes, she’s an unbelievable role model for little girls and even adults. There’s nothing that truly defines a good person, everyone has their own definition. But that little girl forever has been able to make a positive impact.”
An impact that she may never know.
Because on the outside she may look sick.
But on the inside, she’s the strongest of them all.
“I’m sick,” Reina said. “But I’m not broken.”
NOTES >> Please help the Abbie and the Reina family fight this disease. A GoFundMe page has been set up in her honor in order to raise awareness of Dysautonomia and to hopefully, one day, find a cure.