Hi everyone,

My beautiful baby boy, Maverick, is the little miracle and the light of my life. From the moment he was born, he has shown incredible strength, resilience, and sweetness.

Recently, Maverick was diagnosed with a rare genetic condition involving the KCNH1 gene. There are fewer than 100 known cases of KCNH1-related disorders globally, as it's an ultra-rare genetic condition, with some estimates suggesting around 50-100 documented individuals, though many cases likely remain undiagnosed due to the rarity and access to genetic testing. 

KCNH1-related conditions can affect a child’s development, nervous system, seizures,    muscle tone, and sleep. Every child’s experience is different, and that uncertainty has been one of the hardest parts. What we do know is that Maverick will need close medical care, early intervention therapies, and constant advocacy as he grows. Maverick was also diagnosed with Hypotonia, (Low muscle tone) and Global Developmental Delays since 6 months old. 

Hearing those words was heartbreaking and overwhelming. As parents, nothing prepares you for being told your child has a condition with so many unknowns. We grieved the future we imagined while learning how to fight for the one Maverick deserves.

While we are incredibly grateful to have answers and a medical team supporting Maverick, the financial impact has been significant. Between medical bills, therapies that are not always fully covered by insurance, travel to appointments, and time away from work to care for our son, the costs continue to grow.

I am sharing Maverick’s story with humility and hope. Any donation—no matter the amount—will go directly toward Maverick’s medical care, therapies, and resources that help give him the best possible quality of life. If you are unable to donate, sharing this page means just as much to us.

Thank you for taking the time to read Maverick’s story, for keeping him in your thoughts and prayers, and for standing with our family during this journey. Your love and support mean more than words can express.

With all our gratitude,

Yuni.