The Hyper IgM Foundation Blog
THE STORY OF GUS AND ARLO – HOW PIXAR’S THE GOOD DINOSAUR INSPIRED A TRANSPLANT BOY ON HIS JOURNEY HOME
Aug 1, 2017
A single moment can change history. For baby Gus Chisenall, that moment was on April 17, 2016. On that day, Gus began to spit up a peculiar white foamy substance and his eating became unusually scarce. His oxygen levels had dropped very low and, after going to his pediatrician, the emergency room and local children’s hospital, it became apparent that there was something not right with six-month-old Gus.
Gus was admitted to the PICU where he and his family stayed for a month at the local children’s hospital in Alabama. At first, baby Gus was diagnosed with the Coronavirus, otherwise known as the common cold, and his parents were told that he just needed time to get over it. Far from the case, little Gus fought hard to breathe in the 4 days that followed, and his right lung collapsed. His mother Becca pushed for a bronchoscope. On May 11, 2016, three weeks after that fateful day, the doctor came in with the devastating news that Gus had pneumocystis jiroveci pneumonia, or PJP, a form of pneumonia caused by a fungus that does not affect healthy individuals. The doctor explained that the only patients to get pneumocystis are ones with severe compromised immune systems. A week later, Becca was told that the test came back and showed that Gus had a disease called SCID (Severe Combined Immunodeficiency, commonly known as Bubble Boy) and needed a bone marrow transplant, so he was flown to Cincinnati Children’s hospital that same day.
In Cincinnati, additional testing showed that Gus did not have SCID, but rather another rarer type of combined Immunodeficiency called X-Linked Hyper IgM syndrome (Hyper IgM). Similar to SCID, boys with Hyper IgM cannot produce antibodies and are at extreme risk for infection. The medical team in Cincinnati felt Gus was still a little young for a bone marrow transplant and advised to wait a few months. To their delight, the Chisenalls found out that Gus’s older sister, Jennifer, was a perfect match for him. Although, it turned out that Jennifer was also a carrier of the gene mutation causing Hyper IgM she remained the best match for her brother. On August 31, 2016 Gus received his transplant.
So far Gus has been very fortunate not to have any major complications from the risky transplant. Two months post-transplant, he was able to stop all immune suppressants and is currently at 72% donor T cells. For boys with X-Linked Hyper IgM Syndrome, the genetic defect affects the T cells. So, with a bone marrow transplant, you aim for a good amount of donor T cells to stick around to help produce antibodies. For Gus, due to the fact that his transplant donor was his sister, a Hyper IgM carrier, he only has half as many working T-cells (approximately 36%). He may never have 100% donor T Cells due to his donor being a carrier, but he does have enough T-cells to cure him of Hyper IgM syndrome.
Over the long months in the hospital and treatments, little Gus found comfort watching Disney Pixar’s The Good Dinosaur. Much like the main character in that film, Arlo the dinosaur and Gus and his family have been on a journey home, back to a life they left behind. Gus has watched The Good Dinosaur multiple times a day since last June. “It even kept him from being sedated for his [echocardiograms] of his heart two times,” says his mother, Becca, having a soothing effect on little Gus during these long tests. Despite his young age, it seems that Gus intuitively saw the similarities between his life and the movie. The Good Dinosaur it is not a simple journey going home. Instead, the main characters, Arlo and Spot, take a life-changing adventure before they are able to reunite with their families.
All parents worry when their babies get their first cold, but for Becca, Gus wasn’t a normal kid with a common cold; he was a boy with a severely compromised immune system fighting hard to beat a virus in isolation from his family. He had to stay away from his sister while in the PICU and under strict isolation protocols. He went from being able to do anything a normal child could do to being torn away from family and friends — just like Arlo in The Good Dinosaur.
So far Gus has been in isolation for a total of 14 months. “The simple things we take for granted like playing outside, going to church, going out to eat, and going to see family… were all taken away,” says Becca.
The Chisenall family felt that once they got to Cincinnati Children’s Hospital things took a complete turnaround, and they finally had hope that Gus would soon be better. “The doctors and staff at Cincinnati went above and beyond to help us understand and treat Gus,” Becca says. She continues, “Hyper IgM Foundation has the greatest support system! You can always ask and someone can usually help with what you think may not be common.”
Gus’s story was featured in the local news back in June of 2016, and representatives of the Hyper IgM Foundation reached out to Becca shortly after. While Hyper IgM is 1-in-a-million, the Foundation was able to connect Becca and her family with over 160 other families around the globe as part of a support community that helps empower patients and families with Hyper IgM.
Since getting out of the hospital, Gus loves evening walks, playing with his big sister, and of course, watching The Good Dinosaur. After finally coming home on January 18, 2017, Gus is back to living more of a normal lifestyle. “We’re just waiting for him to have a normal immune system,” his mother says. Just like the little dinosaur, Arlo, Gus learned the power he held and discovered what he was truly capable of in order to make his way back home.
Written by Hannah Ross