Sara Emerle: Losing a Mother to ALS and Finding Support Through Medicaid

Sara Emerle knows firsthand what Medicaid means for families in crisis. In March 2022, her mother was diagnosed with ALS, also known as Lou Gehrig’s disease. It’s a progressive condition that gradually takes away a person’s ability to move, speak, eat and eventually, breathe.

Her mother lived just one year and eight months after the diagnosis.

During that time, her medical needs became more demanding. Eventually, she required full-time care. “All of her medical care at the end of her life was only able to be given to her because of Medicaid,” Sara says. “We had to put her in a 24-hour facility because she required 24-hour care.”

Everything her mother needed—tube feedings, specialized nutrition, physical therapy, speech therapy, occupational therapy, dietitian support, and appointments with specialists—was paid for through Medicaid. The facility itself was a Medicaid-covered resource.

“Up until the very end of her life, when her symptoms became more severe, we had to acquire Medicaid to be able to afford all of these progressive forms of care,” Sara explains.

Her mother had worked her whole life. She was a single parent, raising Sara and her sister while holding a full-time job. She paid taxes like everyone else and even made monthly donations to Amnesty International. “She deserved much better than what she got in life,” Sara says. “If it weren’t for Medicaid, my mom would have suffered even more than she already did.”

Sara’s message is direct and urgent. “To make cuts or take that resource away from people with severe disabilities is cruel and should be illegal. Anyone who thinks otherwise should feel the privilege of not seeing how Medicaid can affect somebody’s life.”