I am the father of Sylys, a child with a rare, terminal genetic disorder. I have watched him endure challenges no child should ever face, and I fight tirelessly every day to ensure he receives the care he desperately needs.

Through this journey, I have witnessed firsthand how easily vulnerable children can be overlooked by the system. Parents advocating for their children are often silenced, and families face overwhelming barriers when trying to secure essential services. The current child welfare system is inadequately equipped to address the complex needs of children with severe medical conditions, leaving many families unsupported and alone.

In the United States, millions of children live with rare diseases. According to the National Organization for Rare Disorders, 25–30 million Americans are affected by rare conditions, many of them children. Yet, the systems designed to protect and support these children remain fragmented, underfunded, and difficult to navigate.

We urgently need reform to ensure no child is left behind. I am advocating for legislative and systemic changes that will:

Increase funding for programs supporting children with rare and severe medical conditions.

Streamline access to essential services, eliminating bureaucratic delays that prevent timely care.

Train child welfare staff to understand and meet the needs of medically fragile and terminally ill children.

Strengthen parental advocacy channels, ensuring families’ voices are heard and respected in all decision-making processes.

Equip child welfare employees with the knowledge and skills to handle vulnerable cases responsibly, including understanding relevant laws and medical care procedures.

Over time, I have realized that medically fragile children are not the only ones left behind. Many families with otherwise healthy children also face barriers, confusion, and even wrongful state interventions. This is why my call for reform extends beyond medical cases—it is a call to fix the system as a whole, to protect all children, and to support every parent who is striving to care for their family.

OUR CHILDREN DESERVE BETTER.

Let us stand together as parents, families, and communities to ensure these children remain with those who love them and receive the care they deserve.

NO CHILD LEFT BEHIND!

Sign this petition today to demand a better future for all children—a future where every child is seen, heard, and supported at every turn.