The story of Kira
My name is Kira and I have Tatton-Brown Rahman Syndrome. Also known as DMNT3A overgrowth syndrome. Today roughly 250 people are diagnosed world wide. Everyday I struggle with intellectual disability, sensory and communication issues as well as many physical issues such as joint hyper-mobility and poor muscle tone. This makes things like just playing exhausting for my body and I have a hard time communicating that. I also have a blood disorder that causes my neutrophils to be severely low which makes me prone to infections. I have an amazing hematology/oncology team at Doernbecher children’s hospital and a wonderfully supportive family with the TBRS community. I hope that you will learn more about Tatton-Brown Rahman Syndrome at tbrsyndrome.org