Amilion’s Story

Amilion celebrates with Dr. Sanjay Ahuja

Our friend Amilion recently lost a tooth – as many 7-year-olds do – but Amilion experienced almost no bleeding. This is a BIG deal for a kid with a serious bleeding disorder, and a great sign his new therapy is working well!

Amilion met Dr. Sanjay Ahuja and the Hemostasis and Thrombosis (HTC) team at UH Rainbow before his first birthday. The HTC team diagnosed him with inherited hemophilia B, a rare condition in which the blood doesn't clot properly, leading to excessive bleeding. To make things worse, Amilion developed a complication called inhibitor development, where standard treatment doesn't work, and causes a dangerous anaphylactic reaction. To keep his condition under control, Amilion’s mom needed to administer a medication through a mediport twice each day.

Luckily, UH Rainbow has access to the latest clinical trials related to bleeding disorder treatment. Dr. Ahuja asked Amilion's mom if they would like to participate in ATLAS PEDS, a study using a new clotting drug called Fitusiran – a clinical trial available for children at only five sites in the United States. The family agreed, and the results have been life-changing.

Today, Amilion receives Fitusiran therapy once a month, giving him more time to be a kid!