Miller's Story

On February 21st, 2025 our lives changed forever when we received the whole genome sequencing results for our daughter, Miller. Then just seven months old, Miller was already diagnosed with infantile spasms (a form of infantile epilepsy), developmental delays, and hypotonia. 

After learning Miller has a rare genetic mutation to her ZMYND8 gene, we felt relief in knowing the cause of her ailments but were left with more questions than answers when we found out there are only 11 documented cases of this genetic mutation worldwide. 

Over the following weeks and months, we have tirelessly poured all of our time, energy, and resources into supporting Miller. From extensive physical and occupational therapy to countless nights in the hospital and a myriad of trial-and-error with first, second, and third line epilepsy medications and treatments, we have committed ourselves to helping provide the best possible outcome for our daughter Miller. Despite all of our efforts, her seizures remain refractory and she continues to regress as a result.

It is now our mission to develop a personalized gene therapy to treat Miller’s condition and help advance personalized gene therapy for all neurodevelopmental disorders caused by ultra-rare genetic mutations, specifically with refractory epilepsy. Miller is currently under the care of the amazing neurology and genetics teams at Children’s Hospital of Colorado.

Our current fundraising efforts will go directly to our team of medical experts to develop a personalized gene therapy for Miller.

Miller’s Miracle hopes to transform many lives, starting with hers. 

With hope and gratitude,
Patty & Ron Meade (Miller's parents)