Aaron's medical journey took a life-changing turn when his undiagnosed symptoms were clarified with a rare diagnosis: X-linked chronic granulomatous disease (CGD). This led to a cure — a bone marrow transplant — with the help of a very special participant: his little brother. Specialists at Mayo Clinic's Complex Care Clinic guide children and families through challenging medical journeys with integrated, streamlined care. In collaboration with referring healthcare professionals, we help tackle complex conditions, offer clarity and help families such as Aaron's find the answers they need.
Many children that we see in our complex care clinic are on a medical odyssey or diagnostic odyssey, and what they're looking for is a unifying diagnosis that helps explain what's been going on and what their child's been dealing with. And so when we see children who are on diagnostic odyssey, sometimes we're not sure who they need to see before they arrive and we evaluate them. It is very common for complex patients who come in with several acute issues like Aaron did to have a group of subspecialists evaluate him in a very expeditious fashion. In Aaron's case we felt like a little bit more expeditious approach was necessary. Aaron was born a big healthy baby at his one year birthday is kind of when it kind of opened our eyes a little bit. He was. Severely underweight, um, one percentile, his height was also in the one percentile, so he was, he wasn't growing, he wasn't putting on weight. Our biggest worry was just that he was failing to thrive. We had a lot of middle of the night type of conversations. We're here to make this a successful journey for kids who have chronic medical conditions who especially go unanswered, understanding that the answer is there and at Mayo Clinic, we'll do everything we can to find the answer. One of the unique things about the Mayo Clinic Children's Center is that we have the full breadth of expertise from fetal surgery. to cardiovascular surgery, to neurology and oncology, being able to leverage the expertise across all of these different specialties in a very short period of time is a piece that really helps us find answers and deliver therapies and cures so much faster. At other medical institutions, you know, you have to be put on a 6 month wait in order to get in to get an appointment with, with a physician, having the opportunity to have seen all the specialists in a matter of, you know, 2 or 3 days is a tremendous value. Aaron came to us with a finding of something called eosinophilic gastrointestinal disease, and then I was able to take it a bit further and say, You don't fit the picture of presenting with this as your only diagnosis. Within the whole week that he was here, we were able to get him into at least 6 or 7 more specialists, plus uncover his underlying diagnosis. X-linked chronic granulomatous disease, or in short we call it X-linked CGD for the child, it has implications in terms of what can they eat, what can they do? Can they go out in crowded places? Do they need to be masked? So we kind of get the ball rolling on saying, OK, we can put you on prophylactic antibiotics. Here are some immunosuppressants that will keep your autoimmunity under control. CGD is an inherited defect in your immune system. That means there is a genetic defect that can only be cured by bone marrow transplant. I was fortunate enough to be a part of the team to help get him through the process of bone marrow transplantation. To be able to get that diagnosis and start the treatments for him to get him feeling better was a really beautiful thing to watch. We do special typing to figure out who might be a good match for bone marrow transplant. The younger brother was a perfect match. He now is cured of his condition. We were all able to work together seamlessly and quickly to help make that process as easy for the family. Love partnering with our referring providers so that after we see a child, we can connect back, talk about what those next steps are, and have a plan together. Our goal long term is that they don't need to continue to come back to Mayo Clinic, but that we can help serve them and uh determine a good path forward for treatments and therapies and then to work with their local providers as that child returns back to that community. It was 2 to 3 weeks after we left, he started really gaining weight, his just his energy level skyrocketed and I mean he turned into a different kid I believe Aaron is a priority for everybody on Aaron's team. I feel like we're valued and we're cared about. There you go. Together we were able to do something really beautiful for Aaron. Well
