Dysautonomia doesn’t stop one Richmond teen, family from reaching dreams

RICHMOND COUNTY, N.C. — March 11, 2020. It’s a date circled in one Richmond County family’s memories when their lives were unexpectedly changed forever.

Anniversaries are often remembered for weddings and other major life events. The Howell family recently celebrated the third anniversary of their daughter, Evie, that would see a promising young middle school soccer player go from scoring goals to using a wheelchair with an uncertain future.

Today, Evie, a 17-year-old junior, is on the Richmond Raider varsity soccer team and celebrates with her family not with the number of goals she made but rather the simple ability to step out on the pitch in the Richmond Raider Green and Gold soccer uniform with her friends and coaches.

Joining the high school soccer team was something that almost didn’t happen.

On February 21, 2020, Evie was in eighth grade and had surgery to remove enlarged lymph nodes. After being cleared by the doctors following the surgery, she played her first and only middle school soccer game.

Her mother, Heather Howell, said Evie was physically exhausted after the soccer game, more so than usual. The following day, Richmond County Schools closed their doors and switched to virtual learning, where Evie would spend her eighth and ninth-grade years at home with her parents.

“This was a blessing for us as she was gradually having episodes of leg fatigue, headaches, dizziness, lightheadedness, blood pressure spikes and drops, chest pains, severe nausea, and heart palpitations,” Heather said.

Eventually, Evie was having episodes of loss of consciousness for a short period of time, called syncope, when there was a sudden change in the blood flow to the brain.

“She had days where she could walk on her own and other days where she had such severe leg fatigue that she had to use a wheelchair just to get around,” she said.

Evie visited a neurologist, rheumatologist, and cardiologist to discover what sidelined this once very active middle school athlete to being near bedridden.

Heather, Evie, Kylie, and Mark Howell stand for a photo at the Richmond Senior High School soccer field for a three-year celebration photo of Evie’s battle with POTS.

Evie was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) on Oct. 21, 2020.

“We are very blessed to have received a diagnosis as quickly as seven months, that may seem like a long time, but most dysautonomia patients go many years without being diagnosed,” Heather said. “The doctors revealed to us that dysautonomia has many different underlying causes, such as viral infections, trauma, and surgery, and that we may never know what caused Evie’s.”

Her father, Mark Howell, said that dysautonomia meant that her nervous system had difficulty regulating vitals such as heart rate, oxygen saturation, and blood pressure.

Mark and Heather spent months searching for a doctor who knew what POTS was and could help her. After meeting with a clinical cardiac electrophysiologist who ran some basic tests and again diagnosed her with POTS, their prayers were answered, and they found someone that could help Evie get her life back and hopefully play soccer.

“She was familiar with the condition and was able to start treating some of the symptoms with medication,” Mark said. “A few months later, we learned of a practice in Raleigh that used a holistic approach called ‘Functional Neurology.’”

The Howell family would travel to Raleigh to give Evie that chance. She spent hours with specialists who would conduct neurological rehabilitation and hyperbaric oxygen therapies. She would spend a week away from home in a hospital hoping to turn the page to a new chapter in her life.

After consulting with doctors, they decided to allow Evie to start attending classes at Richmond Senior High School with her friends. With improvements in her health, Evie decided to try out for the Raider soccer team.

Mark and Heather attribute the success of their daughter playing soccer at Richmond to Coach Bennie Howard for helping Evie get some normalcy back into her life. Her love of soccer helped her forget her health conditions for those 90 minutes on the pitch.

“He was very understanding and supportive from the start,” Heather said. “He listened to all her needs and always made sure she was doing okay.”

Howard, a seasoned Raider Soccer coach, was made aware of her medical conditions and limitations and needed a way to communicate with Evie if she began to feel symptomatic during a game.

“Bennie suggested that Evie use a specific hand motion to signal that she needed to come out of the game for a break,” Mark said. “Evie would call his name and would also make a rotating motion with her hand to signal him so that she could be substituted out. Bennie responded quickly to her signals and had a different player on the field as soon as possible.”

Howard said Evie has always been a special person on and off the field.

“She has the strength that allows her to overcome situations,” he said. “She has had some setbacks but continues to improve her skillset and contributes on the soccer field.”

Today, Evie plays soccer on the varsity team with her friends and can enjoy life with the help of doctors, family, and friends.

“As long as we can remember, soccer has been a passion for her, and to see it taken away from her when she was in a wheelchair for close to a year was so difficult,” Heather said. “Now that she is back playing soccer, it allows her to have an escape from her day-to-day challenges and helps her to have a sense of normalcy again. She knows that things will probably never be the same as they were, but she pushes herself to try and be the player that she used to be.”

Richmond Raider head soccer coach Chris Larsen said Evie is still working back into the groove from missing playing time.

“Unfortunately, she missed time in a big transition step between the different levels of soccer,” he said. “Evie is the type of person that you want on your team. Pushing her teammates in practice and gives you everything she has all the time. She is all about the success of the team over that of herself.”

Larsen said Evie’s ability to compete and challenge the other girls, all while dealing with her health issues, is something to be admired.

“Even on days that you can tell she’s not feeling 100 percent, she is still giving everything for her team,” he said. “This type of commitment is contagious and only helps strengthen that of those around her.”

Soccer has always been an escape for Evie.

“I can remember being in ninth grade, sitting on the sidelines in my wheelchair, watching the girls I grew up playing soccer with on the field. It was a very difficult moment in my life; I wanted more than anything to be down on the field playing with them.”

Evie didn’t know if she could ever play the game she loved again.

“I didn’t even want to think of that becoming a possibility, so I worked hard with my doctors to find a treatment plan that worked for me, and anytime I began to feel discouraged, I would try to think back to how I felt in that moment,” he said.

One of her biggest supporters is her older sister, Kylie, who has been there every step of the way.  Although Kylie was three hours away at Appalachian State University, Kylie was always there for those late-night phone calls and video chats to support her sister but said it was difficult not to be there when she had those unexpected attacks.

“As her sister, I want to be there for her not just emotionally but also physically,” Kylie said. “Thankfully, she and I have been so fortunate and blessed to have such an amazing support system in our parents, and knowing that she’s in the best hands possible to put me at ease.”

Evie said her sister has been her rock throughout her life – more so now than ever. Distance is no measure of the bond of sisterhood.

“The distance makes it difficult for us to talk like we used to, but she always finds time, between being a full-time college student and teacher’s assistant, to check in with me and make sure I am doing okay,” Evie said. “She supports and encourages me anytime she gets the chance, she is always willing to just sit down and listen if I need someone to talk with, and most importantly, she loves me unconditionally. I am so grateful to have someone like her in my life to whom I can look up.”

Fortunately for Evie, her sister will graduate in May with her Master’s in Special Education with certificates in Emotional and Behavioral Disorders and Autism. When asked where she wanted to work when she completed her studies, her dad quickly pointed to Richmond County in hopes of having both daughters back home.

Having a child with POTS has been an emotional roller coaster for the Howell family and friends. Heather recalled when Evie used Siri on her phone to call her at work to say she was passed out on the floor and needed help getting up.

“There have been so many difficult moments in the past three years,” she said, watching Evie struggle. “Seeing her pass out just from changing orthostatic positions such as sitting up or standing or having to use a wheelchair to get around because she was too fatigued to stand on her own is heartbreaking,” Heather said.

They recalled that Evie passed out 17 times in one day. “POTS has played a huge role in her mental health,” Mark said.

When asked what they tell their child, who was once extremely active, to now having to question the game she loves to play, Heather said it’s not an easy conversation.

“Although this pain and hardship seem futile, God has a purpose for your struggles and will one day be a part of a great testimony,” she said. “We have to remember that it is all according to God’s will, not ours.”

Heather said the family’s faith and humor get them through each day.

“First off, prayer, but most importantly, she is what gets us through each day with her positivity, her don’t give up attitude, and her goofiness,” she said. “I mean, how many kids do you know that would make a joke after passing out saying ‘I look like a spokesperson for Life Alert commercial’ and referring to herself as a fainting goat.”

Looking back on the past three years of ups and downs, Mark would tell Evie on March 11, 2020, that life was about to change for the worse, but there was a light at the end.

“I would tell her that this is going to be one of the hardest and scariest things that she’s ever had to go through, but to please know that we will be with her every step of the way, supporting, caring, and praying for her,” he said.

Her support system is what gets Evie out of bed each day and the struggles of day-to-day life, not knowing when the next episode will occur.

“Knowing that I have people who love and care for me has been amazing,” she said. “Dealing with something like this on your own is extremely difficult. When I was first diagnosed, I tried to push people away because I was embarrassed, and I didn’t want to seem like a burden to anyone. My friends and family continuously showed me love and support, which helped tremendously. I wouldn’t be where I am today without them.”

The Howell family is now on the waiting list to be seen by the ADAPT clinic for POTS patients at Levine’s Children’s Hospital.

For more information about POTS, visit online at: https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots