Heather Ward-Don’t Wait for Change

Heather Ward Fayette Woman May 2018

Heather Ward May 2018 Photo by Marie Thomas and makeup by Bridgit Crider

Fayette Woman art director Heather Ward is essentially a superhero. She’s not only the creative mind behind much of this publication, she’s also mom to three special needs kids with intense, largely misunderstood conditions – and she’s a key activist for those conditions.

Heather, who was born in Gainesville, has a large extended family and grew up seeing her grandparents three to four times a week. One of her grandmothers managed the lunch room at Heather’s elementary school and her great grandparents lived next door to her grandparents. When her dad’s job at Belk transferred him to Fayetteville in Heather’s eighth grade year, the family still made regular weekend trips up to visit their hometown.

“I come from a family of incredibly strong women,” Heather says. “My mom, my sister, my grandmothers and great-grandmothers. Aunts, cousins…the list goes on and on. We’re tough and we’re stubborn and we get things done. I definitely got that gene and I’m very thankful!”

“Heather is a strong woman,” adds mom Shirley Youngs. “She fights for what she believes in. She’s always been that way.”

Heather with daughter Lucy, sister Julie Wood and mother Shirley Youngs

Unlike a lot of creative majors, Heather didn’t discover her love of art until high school, when  she began creating ads and page layouts for the Fayette County High School yearbook. But once she’d found it, it kept nagging at her until she heeded the call. She attended what was then West Georgia College (now University of West Georgia) and selected an art major in her sophomore year.

“I was so intimidated,” she recalls. “I’d never had an art class in my life. It was a little overwhelming to be working and learning with really magnificent artists, people who make a living in art today. But people were so incredibly welcoming, professors and students alike. It was a small department back then and, when I finished my BFA in 1997, there were only four graphic design students graduating. So it was a very small specialty in a small department, which meant we were all close. Those people are still some of my best friends 20 years later.”

The Youngs, Woods and Wards. Heather and Scott’s family and support group.

Heather’s art classes at West Georgia took her across the globe, from New York to Mexico to Florence to Greece.

“That kind of international travel and exposure to art and different cultures is such an amazing experience to have in your early twenties,” she says. “It really changed my worldview.”

As Heather’s first show approached, she grew increasingly nervous.

“I’d never done a show,” she says. “I only had three pieces and I wasn’t sure any of them were good enough. I’ve always been crafty, but I didn’t know if I could be artistic. I mean, I had to buy two mats every time because I knew I would cut the first one wrong, no matter how carefully I measured. But because it was such a small department, I felt comfortable telling people I was nervous, and those people, the ones I was so intimidated by, they encouraged me every step of the way. They were consistently supportive and terrific. And I ended up winning an art scholarship.”

Heather with her college friends from the University of West Georgia Art Department

“Heather says she wasn’t artistic,” says sister Julie Wood. “But she was always creative. When we were kids, she made her own Barbie furniture from things we had laying around the house.”

During high school and college, Heather worked at Belk, where she frequently played the part of Belkie Bear (a gig she reports is much sweatier than most folks imagine), and then at Cinemark. The summer before finishing college, she interned at Fayette Daily News and was hired for a full-time graphic design position five days after graduation. Eighteen months later, in January of 1999, The Citizen recruited her. She’s been there ever since, also joining the Fayette Woman staff when the magazine became part of the Fayette Publishing family in 2001.

Heather with Fayette Woman friends and colleagues Joyce Beverly, Michelle Brown, Marie Thomas and Bridgit Crider

“I made sooo many car dealership ads in those early days,” she laughs. “But it was interesting how my education came into play with that. I’m not as technical as a lot of graphic designers because I had so many fine arts classes. But all the art files of the cars back then came in in black and white, so I had to colorize them. And I really found myself going back to that fine arts training.”

Heather says it’s been an incredibly busy position since day one – at one point, The Citizen ran five times per week – but that’s the way she likes it.

“I like staying busy, having lots of different kinds of things to do,” she says.

“And I love working on the magazine in particular because every issue is kind of like starting a new art piece. It’s probably the most creatively engaging thing I do and, when my day-to-day gets overwhelming, working on the magazine can keep me in the spirit of creativity.”

These days, it’s easy to see why Heather’s daily life can be a bit stressful. In addition to holding down a full-time job, Heather and her husband Scott are raising three children with autoimmune conditions known as PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).

Kids with PANS and PANDAS experience an encephalitic-like onset of neuropsychiatric symptoms following an infection like Strep, Pneumonia, Lyme, Mycoplasma, Mononucleosis, etc. Effects include separation anxiety, OCD, severe eating restriction, tics, age regression, sleep difficulties, personality changes, urinary frequency, irritability, rage, sensory sensitivities, and deterioration in learning abilities. PANS/PANDAS kids are also exceptionally susceptible to reinfection.

Neely, Lucy and Will Ward 2013

Heather and Scott, a Sheriff’s deputy, met on a blind date in 1999, set up by a mutual friend who absolutely insisted they had to meet.

Heather and her husband Scott in 2000

“I was not excited about going,” Heather admits. “When you’re in your mid-twenties, everybody’s getting married and everyone wants to set you up. But I went and we hit it off pretty well. He drove back down from Decatur the next day just to hang out and ended up standing on my back porch, talking to me and my family for three hours.”

A year later, the two were engaged and, in October 2001, they married and bought a house in Senoia.

“We actually got married Halloween weekend,” Heather laughs. “And we talked about getting married at Disney. Scott was a huge Disney fan and he got me hooked. But we decided to just do something small. But I have this huge family, so we ended up with more than 300 people. We did honeymoon at Disney, though!”

They also went back for their first anniversary, and eventually signed up for the Disney Vacation Club.

“I can’t even tell you how many times we’ve been there over the years,” she says. “It’s definitely a big part of our lives.”

In fact, Heather says the first major PANS/PANDAS episode they experienced with their oldest son, Neely, happened at the Magic Kingdom when Neely was not quite seven.

Neely and Lucy having blood work.

“He essentially melted down over something very insignificant,” Heather said, “and we just knew this was a not a typical temper tantrum. But it took another two years to get a diagnosis. The thing is, spectrum disorders co-occur with PANS/PANDAS pretty often, so PANS/PANDAS kids are frequently misdiagnosed as having autism, or only autism when they have both. A lot of parents also hear Turrets, Oppositional Defiant Disorder (ODD), and ADHD. But PANS/PANDAS, while it has a lot of the same symptoms, is very distinct and requires much different treatment, so it’s important to get a correct diagnosis.”

That’s tough for a lot of families, however. Although the National Institutes of Health estimate about one in 200 children are affected by PANS/PANDAS, which means about 15,000 Georgia kids have the conditions, there are only a very few doctors in metro Atlanta – and none in the rest of Georgia – who are experienced with the disease. None of these takes Medicaid, yet about half of Georgia’s children receive insurance through that program. Further, as Heather and Scott quickly discovered, most PANS/PANDAS treatments are not covered by private insurance at this time.

“When Neely was diagnosed, everything was out of pocket for us,” Heather explains. “The initial conference call with the specialist was $500 alone. We had no idea what we were going to do. And then a colleague came to me – and I’ve never told anyone this – and said, ‘I just received some money and God told me I’m supposed to give you this. I don’t know why and I don’t need to, but please take it.’ She handed me a check for exactly what we needed. I didn’t want to take it, but she insisted. It was such a blessing.”

Scott holds Will after surgery.

The specialist confirmed what Heather and Scott suspected: there was a 99% probability that Neely had PANDAS. Though doctors can’t definitively identify the onset, they believe it was sometime between the ages of three and five, most likely when he had his tonsils removed.

As Scott and Heather worked through the process of having Neely diagnosed, they realized their daughter, Lucy, then four, now nine, most likely had PANS or PANDAS as well, so they spent another two years trying to get a diagnosis for her. Eventually, they switched to a specialist in Newnan, who Heather credits with finally finding the right combination of treatments for her kids – including her youngest, Will, now six – in 2016.

“The doctor has been great, but it’s definitely still a challenge,” Heather admits. “Will has meds four times a day. Lucy takes them three times each day. Neely alone is on stimulants, anti-stimulants, antibiotics, anti-psychotics, and incontinence meds – plus a host of holistic medications. We also use essential oils. And it’s critical that they get their meds. Sticking to our schedule is a huge deal for us.”

And, of course, the expense is still tough. When they found the ideal treatment for Neely, now 13, the meds alone cost $1,000 per 10 pounds and he weighed 93. The first trip cost the family $16,000. Nine months later, they had to repeat it and that probably won’t be the last time.

“Heather holds the whole family together,” Scott says.“I’d say she’s awesome, but that’s not anywhere near enough. She really does do it all: doctors, medications, insurance, working with the state – plus her job.”

Jessica Gowen, Heather’s friend and the president of the Southeastern PANS/PANDAS Association (SEPPA), calls Heather one of the most significant members of the PANS/PANDAS community today.

“Her advocacy lead directly to our ability to present at the New Horizons for Kids pediatrics conference hosted by Emory and Morehouse,” Jessica says. “And she’s been instrumental at having legislation passed at the state level, as well as bringing physicians from the PANS/PANDAS clinic in Arizona to Atlanta to talk about setting up a clinic here.”

Neely with Dr. Kovacevic after his first high dose IVG infusion. Chicago 2014

Heather also spends a part of each day responding to emails and phone calls from parents of PANS/PANDAS kids, connecting them with resources, sending them information, and answering questions. She also connects them to each other and handles all the branding and graphics for SEPPA.

“I have no idea how she does it all, but she just rolls up her sleeves and gets it done,” Jessica says. “She frequently says that you can’t wait for change to come, you have to make it yourself. She’s a warrior for her kids. She’s a warrior for all PANS/PANDAS kids – and their families.”

Medications and supplements for five days at Disney for the Ward kids

Heather says it’s just a matter of taking one day at a time – sometimes one hour at a time – and deciding you’re going to do it. And she says she’s grateful to have a job that allows her to work from home because so many PANS/PANDAS families have to make do with one income. But her employer says they’re the lucky ones.

“Heather is my hero!” says Fayette Woman publisher Joyce Beverly. “I am perpetually amazed at how she manages the challenges of her daily life while continuing to be creative, upbeat and productive at home and in her work with Fayette Woman. Her energy is remarkable and her heart is pure gold. We are honored to have her on our team.”

Unfortunately, Heather’s life just got a little tougher. She’s been diagnosed with cystic lung disease, an autoimmune disorder that affects about four of every million women.

“Unfortunately, one of the symptoms of the specific condition I have is overwhelming exhaustion and it comes on very suddenly,” she says. “But it’s also not unusual for PANS/PANDAS parents to end up sick. We forget to take care of ourselves and we simply have to. I get my nails done. I’ve done Pilates. I get massages. And my mom and sister help out all the time. It’s a journey, but you just take one step at a time and get through and you learn to let the unimportant things go, to let people help you. And you never take anything for granted. For other people, having a peaceful holiday or family dinner out, going shopping with their daughter, that’s just normal. That’s not normal for us. It’s incredibly rare. So we cherish those moments. We cherish each other. And we keep going.”

Heather Ward Fayette Woman May 2018
Phote by Marie Thomas

 

Maggie Coughlin

Maggie is an author, speaker, trainer, strategist, freelance writer, blogger and life coach. She's also a reader, life learner, hair flower obsessionist, dog schmuck, DIY enthusiast, Mensan, and dreamer. Maggie lives in Newnan with her sweet rescue pup, Jazzy.

May 9, 2018

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