Child With Rare GI Disease Awaits Clinical Trial at Cook Children’s
The Michaelis family hopes this year-long medical trial is closer to a cure
Five-year-old Dean Michaelis is full of life, despite suffering from a rare disease that causes his throat to feel like it’s always on fire.
“Eosinophilic esophagitis is a condition where the esophagus is irritated. This happens because of an immune or allergic reaction to food or environmental allergens,” said Anthony Anani, M.D., a gastroenterologist at Cook Children’s.
Dr. Anani says children with eosinophilic esophagitis, also known as EoE, often suffer in silence until they’re diagnosed.
Dean’s parents, Michael and Kelly, knew something was wrong within hours of their son’s birth. They describe how he would arch his back in pain, as well as the visible discomfort he displayed anytime he swallowed. Often, it seemed as if he was going to vomit. It even got to the point where he would try and stick his hands down his throat to alleviate the inflammation.
“He was just always painfully swallowing. It looked painful when he swallowed. He was just miserable, miserable, miserable,” Kelly said.
For the first two years of Dean’s life, his parents and pediatrician believed he suffered from a severe case of acid reflux. However, when they met gastroenterologist Bankole Osuntokun, M.D., Dean was diagnosed with eosinophilic esophagitis within weeks.
“He came in the meeting room and said these two huge words that we’d never heard of. Everything made sense and it was nice to just know what it was. To have a reason after all of that was validating,” said Kelly.
Since diagnosis, Dean has undergone seven scopes and has made a lot of changes to his diet to try and alleviate inflammation in his esophagus.
“A gastroenterologist, such as myself, will need to do an endoscopy. This is when a child comes into the hospital or a surgery center and goes under anesthesia. While they are asleep, we use an endoscope, which is a tube with a camera and light source at the end, and we go down the esophagus looking for any signs of inflammation or irritation. We then take tissue samples that the pathologist will review and give us an idea as to the cause of the inflammation,” Dr. Anani explained.
The Michaelis family recently received some long-awaited news. Dean may soon be part of a clinical research trial at Cook Children’s Medical Center, which the family hopes will be the means to end his pain.
“The study itself is a year-long, and he will be getting three scopes. He has to get blood work, and that’s something we’ve had to deal with too. The new thing is the medicine. It’s an injection, and he has to get the injection every two weeks. What this drug is supposed to do is stop the eosinophils from even getting in his throat. It’s as close to a cure as we can possibly get,” Kelly said.
The Michaelis family says watching their son deal with EoE has left them feeling ‘helpless.’ But they describe Dean as a legend with a huge heart, who has immense love for others and a smile that could brighten anyone’s day.
“Dean is fiercely loyal and loving. He is hilarious, strong, and most of all he is tough,” Kelly said.
Dr. Anani has treated several patients with eosinophilic esophagitis and says if you feel your child might be suffering from EoE, there is hope.
Get to know Anthony Anani, M.D., MBA, MPH, FAAP
"The gastrointestinal (GI) tract is an essential part of what makes us human. Our ability to share a meal with family and friends, to grow to our full potential and to excrete waste products from the body, is very dependent on a healthy GI tract. But when something isn't working correctly, it can cause a lot of health and growth problems.
I've always had an interest in how the GI tract works, and especially how it impacts children. It's a privilege to care for kids with these issues and help them achieve their God given potential.
I joined Cook Children's in 2019, and really enjoy the ability to collaborate with other clinicians and care providers to help the children we care for get well and stay out of the hospital. Caring for children is such a rewarding experience and I'm grateful I get the opportunity to do that every day at work.
When I'm not spending time with kids and families at Cook Children's, I can be found spending time with my own kids and family. I also enjoy sports, especially basketball, and look forward to hearing all about the sporting and academic achievements of my patients."