Doug and Margie Hemme were desperate for answers.
From the day their son John was born, every time they tried to feed him a bottle of formula, he would vomit violently. The couple’s pediatrician prescribed a low-dose reflux medication and switched formulas, but the problem persisted. Underweight and barely able to keep anything down, the Hemmes feared their baby was slowly starving.
They consulted one doctor after another before a gastroenterologist suggested performing a procedure to see if the problem might be found in their child’s digestive system. With John sedated, he inserted an endoscope – a long tube with a small light and camera on the end – into the child’s esophagus and collected tissue samples. A biopsy revealed that the boy was suffering from Eosinophilic Esophagitis, or EoE, an autoimmune disease that settles in the esophagus and can make it difficult to eat or swallow.
After 11 months of watching their son suffer, the Hemmes were relieved to finally have a diagnosis. From there, they began a painstaking process to identify foods that John could safely eat, which required more medical procedures and frequent visits to specialists near their home in Augusta, Ga., and several hours away outside the state who were familiar with EoE, understood how to treat it and could effectively manage their son’s care.
And that was only half the battle. “It was very hard to get everybody on the same page,” Margie Hemme said. “It was taxing and taking a toll on me trying to keep it all together.”
That was until another parent of a child with EoE told her about the Southeast Eosinophilic Disease (SEED) Center of Atlanta. Established in 2012, the nonprofit organization serves as a resource for patients and families affected by a range of eosinophilic gastrointestinal diseases, which constitute a variety of conditions associated with food and environmental allergies. The most common is EoE, which is the result of an above-normal number of eosinophils – a type of white blood cell – found in the lining of the esophagus. Children with EoE experience inflammation of the esophagus, difficulty swallowing, chest pain, vomiting and food lodged in the esophagus, among other symptoms. Some can take medications and eat normally, while others can eat only a limited diet of “safe” foods. In the most severe cases, however, children are only able to receive nutrition through a feeding tube.
“It’s a complicated disease,” said Sheryn Cohen, the SEED Center’s president and chief executive officer. “One of our goals is to educate the families affected by this disease, educate the medical community about the signs and symptoms of this disease and create public awareness.”
To that end, Cohen said the center has assembled a team of researchers and medical specialists, including allergists, gastroenterologists, nutritionists, psychologists and school advocacy specialists, who take a collaborative, multidisciplinary approach to ensure that patients and families receive a coordinated level of care, education about the condition and ongoing support. “We want to create a smooth path from diagnosis to maintenance to a cure.”
As part of its mission, the center also seeks to alleviate the stress that parents of children with EoE face. “Imagine having to tell your child that she can’t eat any food. Imagine having to tell your child you don’t know the answers to his questions. Imagine having to travel hundreds of miles just to find physicians who know anything about your child’s disease. This is what parents of children with EoE face every day,” Cohen explained. “There are so many unknown answers, and they feel very isolated due to the lack of awareness. Parents who can’t give their children food innately worry that they’re not feeding their child, that they’re starving them. We feel like we can help by lowering their stress rate and building a supportive team around them. I’ve seen parents’ stress rates go down just by coming to the center and meeting the physicians. They no longer feel like they’re shouldering the whole thing. They feel like they have a partner.”
Connecting with the SEED Center has made a huge difference for her family, Margie Hemme said. For example, the center has scheduled John’s medical appointments with his nutritionist, allergist and gastroenterologist over a two-day visit to Atlanta instead of the family having to make multiple trips to see each one at a time. The patient binder she received from the center also enables the couple to keep track of John’s doctors, therapies, food trials and more in one place. “They helped streamline the process,” she added. “I can’t even begin to tell you. It’s so much less stressful with the SEED Center involved. It has taken so much stress off our shoulders.”
Today, the Hemmes, who recently moved outside Aiken, S.C., report that John, who will turn 3 in December, is doing much better with the help of a prescribed reflux medication and swallowed corticosteroid. He still eats baby food, but after several successful food trials, they also have been able to add green beans, prunes, turkey and sweet potatoes – John’s favorite – to his diet and hope to see that list continue to grow.
The SEED Center is funded by a combination of tax-deductible donations, in-kind gifts and education and research grants. To help continue its work in Atlanta and also further plans to open more offices across the Southeast, it will host a fall fundraiser on Nov. 8 at Villa Christina at Perimeter Summit in Dunwoody. “Lighting the Path to a Cure” is the theme for the evening event, which will have Kicks 101.5 Tug Cowart as emcee, dinner, a silent auction and a performance by Atlanta comedian Derrick Tennant. The center also will recognize its medical director, Dr. Seth Marcus, with a special award in appreciation of his contributions to the organization and the families it serves.
One of the SEED Center’s biggest supporters is Georgia Commerce Bank and its president, Rodney Hall, who sits on the organization’s board of directors. “The SEED Center of Atlanta is doing important work to help families and children facing illnesses and bringing awareness to the medical community and the community that supports these families,” Hall said. “We at Georgia Commerce Bank are proud to be a part of the work the center is doing in their tireless effort to help families through each stage of this disease. One day, we hope to be a part of finding a cure.”
Until that happens, the SEED Center will continue to measure its success “one family at a time,” Cohen said. “Improving the quality of life for each family is one of our goals. A family may not be able to introduce a lot of foods to their child with EoE, but if we have lowered their stress level, made the obstacles just a little bit smaller and helped create a network of support, then we’ve been successful.”
To learn more about the SEED Center or make a tax-deductible contribution to support its fall fundraiser or ongoing mission, please visit www.seedcenteratl.org or call 770-772-0874. Margie Hemme invites parents to read her blog – “EOS-in-o-WHAT?!?” – about her family’s experience with Eosinophilic Esophagitis at www.eosinowhat.com.