02/06/2025
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For the past few years, our family has been on a journey we never expected. Our son, Luke, has been battling a rare developmental disorder called Polymicrogyria. This disorder causes significant cognitive, emotional, and motor function delays, as well as life-threatening seizures that stole his childhood and nearly took his life.
Luke, once a vibrant and energetic boy, became trapped in his own body as 35-40 seizures occurred every hour. For six days, he lay in a hospital bed, heavily sedated and unresponsive, except for the occasional whisper of “I love you” and “Help.” We feared the worst. It was at this point we learned that without brain surgery, the seizures would continue to ravage his body, robbing him of everything we hold dear.
The road since then has been grueling. After two surgeries, countless appointments, and overwhelming challenges, Luke is now thriving, 517 days seizure-free. He’s learning to read and write again—skills we had to teach him multiple times after his memory was severely affected by the medications and seizures. For the first time, he has a safe and comfortable environment to call his own.
But this progress is at risk. Recent state budget cuts threaten to take away the very support that has allowed us to care for Luke. These cuts target families like ours who rely on the Developmental Disabilities Administration (DDA) for assistance. Without this support, we would lose our home, our medical equipment, and the services Luke depends on. The emotional and physical toll of losing this help would undo the progress he’s made, sending him back into a place of fear, confusion, and regression.
The DDA’s Self-Directed Program has given us the tools to care for Luke. From home visits by nurses to adaptive equipment like a tricycle and an epilepsy monitor, these services allow Luke to live a life of comfort, independence, and safety while continuing to grow and thrive. Without these resources, our family would face unbearable strain. Beyond losing our home and essential devices, we would lose the ability to provide the individualized care his condition demands. Luke depends on us as his full-time caregivers, combining medical training with our personal knowledge of his needs—knowledge no one else can replicate. Without the support we currently have, we will not be able to sustain the care he requires, and the consequences for his development and mental health would be catastrophic.
Our state has a budget of over $63 billion, yet lawmakers have chosen to cut funding for programs that support the most vulnerable citizens, including families with loved ones like Luke. Less than $500 million needs to be cut from this budget, and yet, funding for families like ours is on the chopping block. Why is it that those who need the most help are the first to bear the brunt of these decisions?
It’s not just our family. Thousands of families are at risk of losing the support they rely on, and the consequences will be devastating. For families already facing immense challenges, the loss of support could push them to a breaking point. We are not asking for handouts. We are asking for the opportunity to care for our children, to ensure they have the resources to live a life of dignity and opportunity. We are asking for fairness in the distribution of funds.
Luke’s story is one of resilience, but it also highlights the incredible importance of community and support. Thanks to the help of our neighbors and the DDA, we’ve been able to create a life where Luke is thriving. We cannot afford to lose that. We cannot afford to let other families face the same heartache and uncertainty.
A recent campaign by our state governor touted the slogan, “Leave No One Behind.” It can now be seen on Maryland welcome signs. I urge our lawmakers to reconsider these cuts and prioritize the most vulnerable in our society. All of us deserve the chance to grow, to learn, and to live without the constant fear that the support we rely on will disappear, leaving us behind.
Please, stand with us.
Stand with Luke.
Stand with all families who are fighting for a better life for their loved ones.
