On brink of death, Fredonia grad regains passion for running

Submitted Photo Todd pictured following surgery at Strong Memorial Hospital in Rochester after her diagnosis.

Holly Todd’s life will forever be defined by a bee sting.

For better, the incident in February 2014 helped her find her true passion in running and helping others. Yet for worse, it brought her within inches of death and plenty of emotional and physical scars.

Though through all of it Todd, a native of Warsaw and graduate of the State University of New York at Fredonia, feels lucky to be alive.

“I hate to have this but I wouldn’t trade it for anything,” Todd said. “I just want to be able to tell people my story and help them.”

Todd graduated in 2009 with bachelor’s degree in history from SUNY Fredonia, though she knew it wouldn’t get her far. She originally planned to go to college for biology to jump-start a career in medicine. However, she figured she would be miserable in that field so – like many wayward college students do – she changed course.

Submitted Photo Holly Todd, a graduate of the State University of New York at Fredonia, the day she was stung by a bee while on a mission trip to Haiti in February 2014. The sting triggered a yearlong battle later identified as Dysautonomia, a disorder that affect the autonomic nervous system.

“I loved history but I didn’t know what I was going to do with it,” Todd said.

She went back to school for photography, noting that she “made a good student.” Afterward she started her own photography business while working random jobs. However, even with the income, Todd said she didn’t earn enough to move out of her parents’ home.

“I didn’t know what to do,” she said.

A PASSION FOR

RUNNING

Todd struggled with weight most of her life. Though she enjoyed participating in sports in school, “I always dreaded gym class where we had to run the mile at the beginning and end of the year,” she said.

In 2007, Todd traveled to Florida to watch her uncle run in a half-marathon at Disney World. Watching him run inspired her to take up the hobby as a way to stay active and lose some weight.

She began to take running more seriously after college, and in September 2013, Todd took part in her first “couch to 5K” event in which she trudged through mud and dirt with her friends.

“I saw the pics afterwards and it was the sort of catalyst for me,” she said. “I knew I needed to do something with my weight. So I just started to run. That was my game plan.”

Further fueling her desire to take on new habits, Todd said she was inspired by her sister, Erika, who died in 1998 after being struck by a car. “There are times out there when I am running that I can feel her presence,” she said.

LIFE’S ALTERED PLAN

Without a true full-time job, Todd went on a mission trip through the Warsaw Valley Chapel to Haiti in February 2014 to help build a home for a widow. It wasn’t her first mission trip, and she figured helping others elsewhere in the world was better than doing nothing at home.

“My friend playfully told me I should tag along on the trip,” Todd said. “I told her I wanted to go – I wanted to volunteer.”

One day while clearing land Todd was stung by a bee. She had been stung plenty of times in the past, but almost immediately she knew something was wrong this time. Todd said she felt light-headed and was instructed to lay down and put her feet in the air.

Todd was given saline while members of her church prayed for a quick recovery.

However, once back home Todd said her problems persisted. She had headaches, felt nauseous and was generally tired all the time. Her boss finally convinced her to see a doctor, though her blood work only came back “slightly abnormal.”

Her mystery illness only worsened. Because she couldn’t keep any food down, Todd began losing an alarming amount of weight. One doctor suggested she might have Hepatitis A. Another hinted that she had developed an eating disorder that accounted for the rapid weight loss.

“Nothing would explain what was going on,” Todd said. “I was losing more and more weight.”

More than once she ended up in the emergency room, one time for heart palpitations. There, the doctor suggested she had Post-Traumatic Stress Disorder (PTSD) from her time in Haiti combined with bulimia.

“On Feb. 1 I was fat, the next day (after the sting) I wasn’t normal,” Todd said of the sudden change. “I’m not who I was. I still can’t eat like a normal person.”

Todd’s parents weren’t sure what to make of her illness. She went as far as to call a clinic that specialized in eating disorders in the hopes that someone could provide tips on how to retain as much food – and thus energy – on a constantly upset stomach. However, nothing proved helpful and her condition continued to get worse.

AN ANSWER IS FOUND

Almost a year after Todd was stung in Haiti, her weight dropped from 275 pounds to 104. In December 2015, Todd once again found herself in the emergency room, this time Buffalo General Hospital. She promised herself this would be the last time she visited an ER.

“I was really tired of going to the emergency room and being told I wasn’t sick enough to be admitted,” she said. “They would give me some fluids and that was it.”

While at the hospital, a friend asked if it would be OK to set up a Go Fund Me account to help pay for the $5,000 fee to get into the Mayo Clinic. By the time she left Buffalo General word had spread and the fundraiser had already raised the money needed to see a specialist at the Minnesota medical center.

“Unbeknownst to me a friend had already called the Mayo Clinic and got me in,” Todd said, noting that she was “shocked” by the amount of money raised in just a few hours.

Todd’s insurance wouldn’t cover the costs of treatment and she was already on Medicaid. “The Mayo Clinic wanted to be paid in advance,” she said. “This wasn’t something that we could afford. I felt very fortunate to have great friends.”

Once in Minnesota, Todd was told if a diagnosis wasn’t discovered immediately she would likely have three to six months to live due to her deteriorating condition.

“I was freaked out,” she said. “I was nervous. I prayed to God that if this was my time I was at peace with it since I could die at any time.”

However, unlike the countless doctors back home, it didn’t take the specialists long to zero in on Todd’s mystery illness. A few tests – one being a tilt table test to pinpoint the cause of her fainting spells – eventually confirmed she had Dysautonomia, a disorder that affect the autonomic nervous system.

Though not sure why, doctors told Todd the bee sting in Haiti triggered a response in her body that impacted her nervous system. She underwent surgery to have a feeding tube placed to get her weight stabilized and later received transfusions to help with her weakened immune system.

“It was absolutely crazy,” she said of finding a diagnosis while at the lowest moment of her life.

BACK TO BASICS

Asked if the illness changed her outlook on life, she said, “1,000 percent, absolutely. This has taught me a lot of things. Not knowing what I had, I knew I had to keep pushing and not worrying. I had all these doctors who kept telling me I was crazy.”

With her weight stabilized, Todd got back to her first true passion in life: running. However, the road to recovery wasn’t easy following her diagnosis.

“I wanted to run so badly,” she said. “I would walk to the end of my street and then sit down and rest. I would just go for short walks and eventually start to jog. Running is such a passion and there are so many benefits. … I notice when I don’t run. I feel so fatigued so I wanted to seek out a career that kept me active.”

Since returning to her hobby Todd has taken part in 38 5Ks, seven 10Ks, 12 half-marathons, one full marathon, an “ultra marathon” consisting of 12 hours straight of running and five triathlons. She is hoping to use her story to help others, whether to find the joys in running, help cope with tragedies of their own or both.

Todd recently uprooted from her home in Warsaw and moved to The Dalles, Oregon, hoping to escape the harsh winters once and for all.

“I wanted a new start,” Todd said of her move. “I looked at a map and decided where I wanted to go. I tried Florida but it was too boring. I’m not a beach person. I wanted to try something different and go somewhere else. It was a rough winter and I said, ‘I’m out.'”

She found a job at a running specialty store, helping those find the same passion she has grown to love. Just recently she met a woman while working who also had a autoimmune disorder. She visited the woman at her home and the two discussed their conditions and how they have learned to live with them.

“I feel like I have this platform in which I can tell my story,” Todd said.

Todd has also taken it upon herself to spread awareness for Dysautonomia. She did a run streak in which she had people sponsor her for each mile she ran. She ended up running every day – a total of 165 miles – for the month of October for Dysautonomia Awareness Month.

“I called it ‘Distance for Dysautonomia’ and had a couple of shirts made up to wear during the half-marathons I did that month,” she said.

Todd said she is aware she has been saddled with an illness that will affect the rest of her life. However, she said she won’t let it dictate how she goes about everyday life or impact her fondness for running.

“I just want people to know there is a sense of hope out there,” she said. “You don’t have to let these difficulties define who you are. It’s OK to be going through it.”

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