My name is Niki, and This is my daughter Jada.
Shortly after birth, Jada experienced a stroke caused by a brain bleed. By the age of seven, she was diagnosed with a rare genetic condition that has led to epilepsy, severe developmental delays, tremors, a bleeding disorder, and other complex medical challenges.
Jada is nonverbal and unable to express her needs, so I have taken on the role of her voice and advocate. I have spent countless hours researching her medical conditions, learning the language of her diagnoses, and equipping myself to navigate a healthcare system that often feels overwhelming. Advocacy became more than a necessity. It became my mission.
Jada’s rare form of epilepsy is called STXBP1 Disorder. She also lives with HHT, or Hereditary Hemorrhagic Telangiectasia
This is a bleeding disorder that requires careful monitoring. In addition, Jada is missing 40 genes, a condition formally identified as 9q34.11 Gene Deletion. The disorders she faces stem primarily from this genetic deletion.
Today, Jada sees 15 doctors and specialists to ensure she receives comprehensive and coordinated care. While her journey is complex, sharing her story and raising awareness about her rare disorders has given our family purpose, resilience, and strength.
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