09/05/2025
At around 6 months old, Ellis started to show signs of anemia (although at the time we had no idea this is what it was). For about two months he slowly deteriorated and at 8 months old (January 2025), he ended up in the ER with severe anemia and was hospitalized for 9 days. Since then Ellis has had monthly blood transfusions to stay healthy and stable. When we were in the hospital, they did a bone marrow biopsy to try to figure out what the cause of his anemia was; they had a vague idea, but we needed to do genetic testing to confirm a diagnosis. It took about 5 months to finally get his results backā¦
Ellis has a very rare genetic disease called Pearson Syndrome. A deletion in his mitochondrial DNA. It is one in a million. It is incurable. It is fatal. While death is something that eventually comes for us all, it is not something you ever fathom for your own children, especially at the very beginning of their life. All of our expectations for Ellisās life and how he will grow up have been thrown out the window. This disease is brutal, it is severe and yet thereās enough variation that we have no idea how exactly it will express itself and at what time. He is on a completely new path; all we can do is take each day as it comes and to hope for the best while knowing the worst of it will eventually hit us.
Our goal in setting up this page for Ellis is so that anyone can keep track of his journey, to bring awareness to this disease, and mostly to lessen the burden of updating friends and family individually. We donāt want Ellis to be defined by this part of him. He is growing into such an affectionate, confident, goofy, adventurous kid. To us, he is completely normal and capable. He is the perfect blend of us both; luckily inheriting his dadās leggy body, our shared stubbornness, and my emotive expressions.
Thank you for following along on Ellis's journey ā¤ļø
