Last week, our member Chris Dunham from Feasterville, PA testified at the U.S. House Democratic Steering & Policy Committee to share his family's story about the importance of Medicaid. Here is his story:

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One month after Will was born, we noticed problems with his vision. What followed was an extremely difficult few years, with Will battling seizures, struggling to sleep, and missing milestones. At age 5, he was finally diagnosed with FOXG1 syndrome, a rare genetic disorder that causes global developmental delays, neurological problems, and other health issues.

Children with FOXG1, lovingly called Foxes, need round-the-clock care. The syndrome has a range of severity and Will falls in the middle. His first symptom was cortical visual impairment, followed shortly by cataracts. He doesn't communicate verbally and uses a wheelchair. Surgically, he’s had a feeding tube placed, his cataracts removed, and rods implanted in his back to help correct scoliosis.

Therapies have helped immensely, most notably with vision. We suspect his range of vision was less than one foot at birth, but therapy improved it to around 20, offering him a presumably better future. He’s a blessedly happy boy, smiling and laughing throughout his day. Common for most Foxes, he loves water and music, as well as balloons, travel, and his bed friends.

When he was a baby, I left my career as a librarian to care for him full-time while Maggie continues to work in healthcare. After one too many hurricanes, my parents recently moved in with us from Florida and we anticipate that as they get older, they’ll need care, too. Like many Americans, our household is a balance of juggling schedules, caregiving needs, and finances.

Recently, I qualified for a stipend as a live-in caregiver through Medicaid. That’s made an enormous difference and has enabled us to get mostly out of debt, with the exception of our mortgage. We are not wealthy - we’re just trying to make it day-to-day. Medicaid is nothing short of a lifeline for us.

With Republicans proposing slashing hundreds of billions of dollars from Medicaid, all to pay for tax cuts for billionaires, our future is uncertain. These cuts would have devastating consequences for my family. It is also heartbreaking, because I’ve been hopeful that our country was moving forward in recognizing the need to invest in the care economy.

The care economy saves lives. Please protect it. This starts with paying caregivers what they deserve. I have two herniated discs from lifting Will because, for the past few years, we’ve only had aides three evenings per week due to a lack of available staff. Slashing Medicaid would send us in the wrong direction, we must stop these cuts. 

My wife and I are not young and as we get older, we know we won’t be able to care for Will forever. We need Medicaid. As a father, I’m grateful for everything you do to protect Medicaid. Our families, communities, and economy depend on it. Thank you again.

Chris's story was also featured on The Last Word news show that evening. You can also watch the hearing in its entirety here: https://www.youtube.com/live/-8lQ-34abhs

Do you have a Medicaid story? We want to hear from you! Tell us your experience here.