Hi, my name is Kamari, which means moon. Under normal circumstances, I’d be too young to be here. If I were sharing anything at all, it would be stories about naps, bottles, tummy time, and learning how to be a baby. I am still a baby, just not under normal circumstances.

One month after I was born, while still in the NICU, I was diagnosed with a rare genetic syndrome—one so uncommon that many clinicians will never encounter a single case in their careers. That diagnosis changed everything for me and for my family. Since then, my parents and I have been on a journey filled with challenges, hope, and a determination to make a difference for others like us.

Our story is about more than just our family. We hope to increase awareness of rare genetic syndromes, support and fund genetic research, expand access to and understanding of genetic testing, and advocate for improvements in medical care. Your support will help us travel for treatment and continue our advocacy efforts, ensuring that stories like mine are not overlooked and that future families have better information, better care, and better options.

Thank you for standing with us. This effort is led by my parents, guided by lived experience and informed by ongoing care and engagement with medical and patient-advocacy communities.